Tuesday, September 30, 2008

Preemie After Preemie

During a recent discussion an anonymous person wrote:
"I'm not trying to be mean, but how about starting with not having another child since you obviously can't afford it?"

I replied:

"You may be shocked by what I'm about to say but... you are right.

Hubby and I did not plan on having more kids. Not only were we afraid that we would have another preemie (since we didn't know why my water broke with Paige), we also knew that we couldn't afford to have another child with disabilities. Also, every time we had talked about trying again (a few years after Paige was born), we both knew that we would not be able to live with the guilt if the 2nd child ended up with long term issues secondary to prematurity, just because we wanted more children."

I didn't realize that I'd be opening a can of worms when I posted my reply. But, since it's open already (which is evident by the emails I received), let's discuss.

Should people have more children if they don't know why their previous pregnancy ended early and thus cannot be sure their next child will not be born early?

Before you say that it is a personal decision, think about how it could affect others. Government assistance, health care costs, additional resources needed in school, etc... all ways that ones decision affects others.

The topic of over population (not relating to prematurity) is a hot topic. I found it quite interesting while reading a recent issue of my VegNews Magazine that people are choosing to not have children to control the population. Salon also took a comprehensive look at the issues in their article "Do We Need Population Control?".

I am not trying to start a war here but I do feel that the topic is worthy of discussion. Count to 10 (or higher) before leaving a comment please. And, once again, please leave your deity at the door.

37 comments:

Sarah Blake said...

Some background before I leave any substantive comments... I am an adult preemie, age 36. I have wanted a baby for a long time. I was married during a time when I was experiencing symptoms that suggested PCOS. I later discovered that I was experiencing metabolic difficulties related to an antiepileptic medication; but I had two or three cycles per year for eight or nine years. I have now been divorced for ten years. I am on a host of meds for neurologic disorders, chronic respiratory illness, and autoimmune disease. Birth control medication causes intractable migraines--I learned this during my marriage.

My premature birth was caused by incompetent cervix, a questionable diagnosis until my sister was born. She was full-term but her birth was very quick: within an hour of arrival at the hospital. She has two children and has had one unsuccessful pregnancy. Her children are 11 years apart, and her experiences gave me reason to suspect some hereditary issues in my family. I don't suppose I have any way to know.

The issue is a moot point for me at the moment except that my doctor exclaimed over my decisive negative answer to her question of whether I planned to carry a child in my lifetime. I don't plan to. Unfortunately, there are limitations on methods of birth control that I can use; and birth control itself has limitations. It will be a responsible thing for me to have a contingency plan in place to handle a pregnancy should one occur if and when I become sexually active. Speaking realistically, most people who have a first preemie don't expect to have one, and many people expect to have another preemie end up with a healthy full-term baby. It's one thing to choose not to actively plan something. But choosing to have one's tubes tied is a different issue, incurring more medical costs for starters. Also, for a young female, doctors do often refuse to do the procedure. I have met young women with serious medical conditions or who simply believe they would not parent well and who wish not to have a surprise pregnancy, and their doctors believe they will change their mind when they are older.

Aidan's mom said...

Oooh...this IS a can of worms Stacy! I will say right out of the gate to your other readers....PLEASE do not be offended by my rather black and white view on this. These are my own judgements and should in no way express my feelings about what anybody else should or should not do.

My own personal decision on this is a pretty clear one, surprisingly. My DH and I had a long talk about this and decided (before we knew definitively why our son was a preemie...though we thought we knew) what our decision was going to be about expanding our family. We decided that two things were deal killers for more children. 1. Not knowing why he was early and 2. Knowing why he was early, but not feeling fairly confident we could avoid it in a subsequent pregnancy.

I realize this is very black and white, but it is the way we both feel.

Weeks after Aidan's birth, the pathology report on his placenta came back along with more sensitive blood clotting tests. We combined the knowledge of his severly clotted placenta, my now confirmed clotting disorder, and the severity of my HELLP syndrome and decided we were done.

There are a lot of factors that weighed into our decision. Aidan was 27w 6d and the next baby *could* be earlier. Our outcome, thus far, with Aidan is a good one, and we were both petrified at "rolling the dice" with a different outcome. We are now 37 y/o. I really almost died from my HELLP. I had Class I with a near liver rupture and almost no platelets detectable at time of cesarean. I lost 5-6 units of blood.

And most importantly...(and some may say selfishly), we weren't entirely sure our marriage could survive going through this or worse again. Even with a "good" outcome, preemiedom is intensely stressful and DH and I really understand why a lot of marriages don't make it.

We count ourselves lucky with what we have. A kid who seems to be doing well so far and an intact marriage.

I can't say I never have the little urges arise for redemption via another pregnancy. It happens. But it is soon squelched by thinking about what could happen if we don't get so lucky the second time around.

Tough topic. Glad you addressed it.

terri w/2 said...

Twins are prevelant in my family. .and along with that, preemies. We had decided (sort of) after the girls were born that this would be it. Too much stress (and lifting) in caring for my severely disabled child made me wonder how successful I would be in carrying another pregnancy anyway, not to mention, I already had my hands completely full.

My friends and family really wanted me to have another baby, for reasons you mention "just to see how wonderful a normal birth would be". . but I was terrified of going through the NICU experience ever again. .and possibly having another child with disabilities. I would never have been able to forgive myself for putting another child through THAT hell.

At times I have a twinge of regret - especially now that I see classmates having grandchildren - I know this will never be my reality, and feel that I am missing something. On the other hand, my life is full, and energies directed elsewhere.

My husband used to tell people that we were "robbed" of the birthing experience - at the time, I was very hurt to hear this, but he was absolutely right. Nothing about this was good.

Carrie said...

I was "lucky..." My preemie was my second born. We were pretty sure before having him that we were only going to have two. Having a preemie sealed the deal - although I still wish I could "finish" that pregnancy.

About cultural/economic implications... I am always surprised when I hear someone is pregnant after having a preemie. (Oh, if I am being honest - I am surprised when I find out people plan on having more than 2 kids. I am an only child and was raised by parents that firmly believe in zero population growth.) I have questioned in my head why would someone want to chance going through the trauma of having a preemie again. Why would they possibly want to see their baby go through that? I haven't really thought about the finacial aspect.
Obviously, there are plenty of women that go on to having full term babies after a preemie.
I am looking at this completely from the outside. I have my two kids, I don't feel like my family is not complete. I can guess as to what we would have done had our preemie had been our first, but it would only be a guess.
I am interested to read others' thoughts on this.

Sarah said...

I don't tend to be too offended when people say things like "only have babies you can afford". I cannot disagree.

My daughter came because of PROM at 33 weeks. Beyond her NICU bill she didn't cost more than the average baby. I was told that PROM tends to be a fluke since I had not dialated at all before hand, and that it would not happen again.

It happened again, next baby at 35 weeks. He has cost us a small fortune, but beyond Nutramagin, nothing can be tied to him being premature. He was actually fine until 6 months of age. Now he has a lung disease and is on oxygen. Would of happened regardless but I have to explain that each and every time someone asked what is wrong because they assume. I am always asked first, "was he premature".

3rd baby came, as an oops, she was not planned. She was born 4 days before her due date.

So I guess, I really don't have a problem with that question. I think we should ask that question to those outside of the preemie community as well. Where I live we have a ghetto full of babies that women can not afford. I am totally against abortion in that situation, so for me, it would be nice for those women to be responsible enough to not get pregnant.

I would like to say though that population control is complete garbage. All you have to do is look at China and realize it doesn't work. A whole generation of boys with no girls to marry is NOT a good thing. Look at europe they are begging women to have babies because there populations are dwindling. You need more babies than oldies. I believe in good birth planning. I believe women should have the babies they want. I believe women should have the resources to plan there family as best as they can.

I do not believe in coersion and extortion to limit the amount of babies a women has to fit some grandeose ideal of population limits. That is ill concieved and has long term, unfixable consequences that these people do not understand.

Paul, Misty, and Evan said...

I had my son at 26w 1d, and have decided that if we do get pregnant again (it took two years with him), I would have some strict opinions about it. He has no ill effects of his prematurity except for a little asthma and he's right on track right now with his milestones. I know that it all could still go south, but have found myself looking to the future to possibly have another one. I am open to the idea. We're pretty confident that I had an infection and possibly an incompetent cervix. So, it's not out of the question to try again, placing a cerclage and doing some modified bed rest. I'm just not jumping at the chance, you know? My husband and I have talked and know that we would not provide rescusitation before 26 weeks. We got very lucky with Evan. I know that is what is right for us.

However, the longing is there. We're just so far from making this decision again that I don't feel anything too strongly about it yet. We'll wait until two years post delivery to even try again, and who knows, will we even want to? Will it even be possible for other reasons (finances, insurance, etc.)? So much is unknown for us, but it is refreshing to hear others' opinions from their situations. Thank you for this blog. I love it!

Anonymous said...

It is absolutely a sticky subject. My first was a full term 9lber. Second came our 33 weeker, my water broker @ 32 weeks. A fluke they said. I believed them. Along came our 25 weeker, my water broke @ 24.6 weeks. We love our son dearly but I do wonder how selfish was it of us to roll the dice. We are absolutely done as I wont do that to another child. I had a cerclage, did all I could and still he is lucky to be alive.

When I hear of others with serial micros or close to it, honestly, it makes me a little ill. Every so often this topic will come up on the preemie lists and it is always a divisive, angry discussion so I hope this doesnt go that route. I will say it makes my blood boil when moms of preemies, ESPECIALLY micro-preemies take further pregnancies lightly. That is the most selfish thing I can imagine.

23wktwinsmommy said...

As many frequent readers know, I have 2 year old former 23 week twins. I went into preterm labor without knowing it...only a routine internal ultrasound scheduled at 23.2 revealed the bulging membranes of our baby A. I was already 3 cm dialated at admission to L&D. Bedrest and meds didn't work and I had to have an emergency c-section 3 days later when I completely dialated and baby A's foot was coming out of my cervix.
No testing was done of the amniotic fluid or placenta because the emergency c-section was done by the only OB at the hospital not doing a c-section at the time. She didn't know me from a hole in the wall and nothing was done to help us understand why things went so wrong. It could have been an infection, but we really have no answers. The twins were spontaneous, and there is a genetic link to twins...my dad is a twin...grandma and I are probably 'double ovulators.' (Dad and uncle were full term.)
DH is in his early 20s and I am officially mid-20. We are young enough to wait awhile to make the decision of more children.
I have almost officially made up my mind...I want more children. DH agrees, although we are both scared.
There are some conditions.
1.) A full perinatal appointment before I discontinue my birth control.
2.) Begin trying at a point that we could financially afford complete bed rest if I ended up needing it (aka at a point where we only needed his income.)
3.) We wouldn't try until we had a better understanding of E's needs. He is still not walking, but is expected to. I would have to reconsider having another if he didn't walk...again it's likely he will walk, but we're being cautious here.
4.) We would demand a very highly involved OB who was open to trying P-17 shots amongst other things to protect the pregnancy.
5.) Strict diet for me and relatively frequent cervical checks, because we can't rule incompetent cervix out, although my OB feels it was an unlikely cause. She didn't give me a good reason why she thought that. Something to ask the peri when the time comes.
If we do have another and he/she is born prematurely I will feel terrible. I will feel an incredible sense of guilt. But I am certainly open to parenting another child with special needs and really do feel strongly that the lives of those with special needs are worthwhile and precious. This is *my* personal opinion, and it goes along with *my* choice not to abort a child with DS or spinal bifida, etc.

I am hopeful with the steps we plan to take that I will get some answers of what could have gone wrong and do everything medically possible to ensure a healthy pregnancy and birth. Of course there are no certainties and we know this and know where we stand on resuscitation and ending treatment should we face another premature birth. As long as DH and I are on the same page, I feel good about our decision...even if it is 3 or so years away....

Anonymous said...

I am a mom to 3 year old former 23 weeker. He has met all his milestones, docters are shocked to know he is a former 23 weeker and every medical person ends up taking a picture with him. Anyway having said all that would I risk another premature birth, don't get wrong I would love for him to have a sibling BUT NO I WOULDN'T DARE. What he went through in the NICU is not worth it I would never put another baby through it.

dee said...

"Where I live we have a ghetto full of babies that women can not afford. I am totally against abortion in that situation, so for me, it would be nice for those women to be responsible enough to not get pregnant."

I live in a third world country, where we have a whole nation full of babies that women cannot afford, many of them with HIV. I really don't think its a case of women not being responsible enough. In most cases its women not being empowered enough to make informed decision about birth control.

In order to really get zero population growth we need:
1. Free (really, free) contraception to anyone who wants it, in whatever form works best for them, including sterilisation on demand.
2. Proper sex education, from a young age. 9 or 10 is not too young to start teaching children about safe sex and STDs.
3. Proper pre-natal and post-natal care in developing countries, so families won't feel compelled to have more children in case some of them die young (i.e. insurance for their old age).

Most of all (and this is not going to happen any time soon) we need an end to the unequal power relations between men and women, an end to gender based violence which deprives women of their right to reproductive freedom, an end to forced marriages and child brides, and an end to rape.

Ang said...

I don't want to tell anyone what they should or shouldn't do, but I will share my decision. I chose not to have any more children after my second child was born premature. My doctor said my chances of having another, even earlier, preemie were high. I always wanted 4 or 5 kids, and was heartbroken, but there is nothing that would make me knowingly do that to another baby. Don't get me wrong, I am grateful for my son and am so happy to have him - I just would not choose to put a baby through the NICU and choose for them to have the lasting effects of prematurity now that I know it's a strong possibility. For me, it had nothing to do with money or population control - I just couldn't take the guilt. I feel incredibly lucky and blessed to have the 2 I have.

Susie Korbel said...

I have to say that I agree. Regardless of the societal implications, the bottom line is, is it fair to the child?

I have relatively minor issues compared to a lot of preemies, but they have a major impact on my life. I can't even imagine the difficulties that moderately to severely disabled children have to deal with, especially after reading about Paige's struggles.

I know that after having one preemie, your risks of another are elevated, and if they had no idea why the first baby was premature, there's no real way to try and prevent a second if you were already practicing good prenatal care.

I wouldn't take the risk myself. I know it's not really the same but I view it the same way as regular people having babies they can't afford (how can you give them a good quality of life?), or people with a disease that is genetically passed down who choose to have children.

Kristie McNealy said...

As a mom of three - born at 36 weeks, 31 weeks, and finally 39 weeks 1 day - I can say been there, done that.

In my first two pregnancies, I was tagged as a hypochondriac medical student. I didn't advocate for myself and my babies strongly enough, and the student health docs didn't order bedrest, so I couldn't get medically excused from my rotations until it was too late. At least that's the way I see it.

We made the conscious decision that we weren't done having kids. I became a SAHM and we got a doctor who was aggressive about keeping ahead of problems. We had a close call at 32 weeks, but this time, everyone was on top of things, and I walked out of the hospital after only one dose of terb and stayed pregnant 7 more weeks.

We actually planned on 4 children, but are still thinking about that. This is a personal decision. I won't respond to any "you're overpopulating the planet" comments directed at me, so everyone can feel free to keep them to themselves.

Kate K. said...

I think that overpopulation is a concern for many reasons. It puts a strain on the environment. But I don't know how you "control" overpopulation. I don't think that legal restrictions are the way to go. Social pressure is probably the best that one can do. Change social norms and expectations. But I suspect that preemies aren't really a major part of "overpopulation," although preemie numbers have grown.

It does amaze me when people say that they've had four preemies in a row and then they plan to have more. Seems to me that after two, one might reach the conclusion that it is best for the sake of the children to stop. Adopt if you want more.

I also am surprised that people go to fertility clinics and get implanted with multiple embryos when the risks are so high for the babies. That strikes me as irresponsible, and it is shameful that doctors aren't informing patients fully about the risks.

I would say that whether a person decides to have more children after having a premature child really depends a lot of the circumstances. We plan to see a high risk specialist and really take a look at why my son was born so early and if it could have been prevented. My OB was incompetent, wasn't taking my blood pressure properly, missed a lot of signs, which resulted in an emergency birth. I wasn't put on bed rest, which I should have been. If the high risk OB says that the risks are high, we won't have another child via me. We'll adopt. My son is a 25-weeker who is doing incredibly well, looks great. He's 17-months old, so we are hardly in the safety zone. Even if things end up for him such that the whole preemie thing is a distant memory, it would be selfish to knowingly put another child through what he went through if I could prevent it.

Kyrsten said...

These are extremely tough topics, but I agree with comments made here (and even if I didn't agree, I respect everyone's right to disagree!).

I posted my "defense" in the last topic, when the "don't have any more children" line came up (Stacey, I thought --I'm fairly sure-- it was directed at me). I mentioned things like, "should only the wealthy have children? --or be entitled to quality healthcare?" since that's the issue on hand.

I agree with Sara, that forced birth control doesn't work; I agree with Dee, that true empowerment is needed; I agree with 23weektwinsmommy that the thought of putting another child through NICU hell (or 3 days of horror before death, as my son did) is a tortuous thought for me...

So, when I found myself unexpectedly pregnant again, would the "responsible" thing for me to have done was to have an abortion? That almost seems to be the suggestion.

Personal choice works both ways, and we decided to "roll" with it. I know that the best of care can't promise a full-term birth, but a FT delivery doesn't ensure a healthy child, either... Life also doesn't promise that my son will live to old age.

There are implications on society both ways-- when population is controlled or not: I know it's idealogical, but I still hold out hope in my son's potential to "save the world."

As kind of a p.s.-- along the lines of social change, *somebody* (everybody!) get involved in changing the adoption process in this country!

Eleanor said...

It's interesting. This topic always seems to be divided largely along the lines of micro preemie, unknown causes being no more, and later preemies, known causes as yes.

I have 3 kids - 33 weeks, 36 and 36 weeks. All were early because of pre-e. After our first hubby and I had a hard talk about what to do if the baby came even earlier, resuscitation, do we even try etc.

William was difficult (later dx'ed with Asperger's) and we'd done the reflux and later oral aversions dance but we decided to try again. The docs also said the pre-e tends to be a problem of first pregnancies. They ran lots of bloods and decided there was no reason for the pre-e.

The pregnancy with Nicholas was very difficult and he nearly arrived at 25 weeks but somehow I had a kind of grumbling pre-e and it didn't come to a head until 36 weeks when they decided I was much worse and he needed to be delivered - NOW!

The docs who have dx'ed the boys - Nicholas has ADHD - have said that with the absence of family history and the boys' prematurity, it is probable and fair to say their dx'es are due to their prematurity and their difficult pregnancies.
We also did the reflux and feeding problems dance again with Nicholas.

But Nicholas wasn't dx'ed until about a year ago, William wasn't dx'ed until a long time after Nicholas was born!

We figured that with good OB care (which I didn't have with Nicholas)and the fact that a number of people consider 36 weeks term, that it was worth another whirl.

It was another difficult pregnancy with Thomas and they delivered him at 36 weeks on the dot as my pre-e had got to the point I was actually twitching!

Who knows if the unmitigated disaster Thomas' reflux and feeding has got into is due to his prematurity or just a consequence of medical mismanagement in his early months and now fractured care with no one actually taking proper responsibility for anything - yes I am going to scream at the paed when we see her next month!
He has food allergies as well which considering the allergic history on both sides of the family was inevitable that they would happen eventually - but anyone can have a rotten heritage!

He does have a speech delay which they have said is some kind of processing disorder but aren't prepared to pin point it any further. There is dyslexia in the family too so maybe it's just come out in him too.

Would we have another? I'd love to. Will we? I have no idea! Probably, sadly, not - just on the basis of my on going work load with the boys - I can see Thomas' processing problems equaling educational problems later.

I think a major part of the problem for preemie parents is that we have so much more of an idea of what can go wrong, than the 'average' full term parent. But some times we have a so much clearer view that we forget that having a child is a cr*p shoot anyway. There are never any guarantees, anything can go wrong even for full termers during the birth process, some people have awful family health histories too. Should someone with an extensive family history of cancer not have kids in case they develop it later? It's all a toss up - just for some the coin is weighed heavier on one side than the other. As in most things in life we are shaped and learn from our experiences.

TwinsX2 said...

Wow, so many things rush around in my brain. First of all, there is a limited window when a woman can have children. Even though medical science seems to be trying to keep that window open longer. So, you may be “unable to afford” children when you are in your 20’s but for the most part, that is precisely when you are “supposed’ to be having them.

I married late at age 30. We had problems conceiving so we turned to fertility treatments. Those worked very well for me as my first pregnancy was triplets. I went into preterm labor at just over 21 weeks. Lost one baby at just over 22 weeks and made it to 25 weeks with the other two. We had private insurance since we were both self employed. However, we ran up about $75,000 worth of bills in the next few years, related to the boys. We paid those bills off. One of those boys is multiply impaired and will live with us forever. Or until we can’t take care of him. The other, well, the jury is still out on him. He’s in a regular education classroom doing grade level work. But, both boys have autism and the one is a very quirky boy.

We used IVF to conceive a second time and had a daughter, full term. Apparently she is a NT child and is developing typically. I have no idea since she is my only “normal” child and I no nothing about “normal.”

After many years of discussion, we decided that we should have one more child. We thought that our daughter would appreciate some moral support with having tow brothers that may need lifetime watching over. So, we did another IVF. In the meantime, we had racked up another $50,000 in medical bills but managed to pay those off. We paid cash for the third IVF and I found myself pregnant with another set of twins.

I was at home after the first birth and DH had supported us during all those years. However, he was diagnosed with Rheumatoid Arthritis and during my last pregnancy suddenly crashed and became disabled. I spent the last few months of my pregnancy looking for a job in the want ads and hoping that one would coincide with a couple of weeks after the birth. I went to 37 weeks and had my boys. They weighed 7 pounds 9 ounces and 6 pounds 2 ounces. Pretty good for having an incompetent cervix,

I did find a job one week after the boys were born. I interviewed for the job 2 weeks after they were born and started work 7 weeks after they were born. Since they my employment has been up and down. People just aren’t crazy about a woman with 5 children and a disabled hubby.

Unfortunately, my first 2 boys autism must have not “just” been preemie related because last 2 boys also have autism. One high functioning and one low. I so wish now that I had that $125,000 in medical bills that we have paid. I work sporadically; DH stays at home with the kids and draws SSD. I am now 46. No one wants to hire a 46 year old with 4 disabled kids and a disabled husband. One of my younger boys will need one of my kidneys in a few years.

So, when I was in my 20’s, had I been married, I probably could not have afforded to have kids (student loans) the infertility problems not withstanding. In my 30’s, I could afford them so we had them. Now, due to a reversal of health and fortunes, we can’t afford the 5 kids that we have. So, what are we to do? Hopefully in a few years, we will get back on our feet and people will be amazed at how well we have done IN SPITE of having 5 kids. I don’t5 know. The kids are adequately provided for. I shop garage sales and Goodwill. I have to go to a work related formal in a few weeks. I got my dress for $4.99 at Goodwill!!! I am very loath to judge others because over night, things change.

Tamara Coburn said...

Ahhh, this is a tough one. I had my first daughter, a 32 weeker, who was on a vent for 3 days and a total of 3 weeks in the NICU. No known cause. I had no indication that I was in labor (no pain, no contractions) and went to the hospital for bleeding. I delivered her 4 hours later. It was considered a "fluke".

The decision to try for a 2nd was a torturous one. But my preemie daughter was a normal, healthy 3 year old.

So I had my 2nd daughter and carried her to 36 weeks. She was technically a preemie but not 1 complication. We brought her home with us. It nagged at me that she was early too but she was perfectly healthy.

My husband and I always wanted 3, so we agonized for a few years over it. I kept asking myself if I was testing fate one too many times. Then I would look around at the thousands of babies born every day, the friends and family who had uneventful pregnancies. Just as a lot of women forget the pain of childbirth the details of your preemie's stay and birth get fuzzier with time. We had no reason, no diagnosis, nothing to indicate why my other 2 had come early. If there had been a clear diagnosis I would have said "stop".

But I wanted another baby, to try for a son. I did everything right, I took prenatal vitamins. I went to the OB/GYN before deciding to become pregnant. We planned and it was 3 years after my last birth.

At 20 weeks, we found out my son had a birth defect. A bilateral cleft lip and palate and other issues. I did everything right, I had no family history of birth defects, I took my folic acid, I took my vitamins, I ate healthy. Which just goes to show that NONE of these things can be anticipated or planned. I learned with my first child, and I'm sure most preemie parents can relate... you are helpless. There is not much you can do to protect your child no matter how much you've planned or tried to be cautious.

On top of that, I developed severe HELLP syndrome at 26 weeks. Unusual, considering that pre-eclampsia and HELLP 80% of the time strike first-born babies. It came on fast and I nearly died. My son nearly died.

I'm not that guilty type. I know that what happens... happens. I've never taken any of my pregnancies or children's prematurity lightly. It never gets easier but the 2nd time around having a premature child you do become numb to a lot of issues that other parents consider severe. I recall watching a "Baby Show" where the parents spoke of "all the medical equipment" their child came home on and how scary that was. They had a bili-blanket for jaundice.... As a preemie parent I know what jaundice is and how, comparatively, treatable that is. I didn't even blink at the fact that my son or 2nd daughter had it. There's a certain amount of "numbness" we start to experience going through it. I don't believe it gets easier or less stressful or heartbreaking though. It's just that as preemie parents we usually either become over-protective or more laid back.

Anonymous said...

My decision to have anothera second baby - my first was a 29 wk preemie - was driven by my desire for my son to have a sibling. I have two sisters, my best friends, and I could not imagine a life for my son without a sibling.

I knew that the cause of my first son's prematurity was fibroid tumors. I had a myemectomy, removal of the tumors, when he was 1 yr old, and got pregnant again a year later. I had an awesome perinatologist and in spite of 3 new fibroids, my second boy was full term. I know I was lucky and I know my second pregnancy could have ended differently, but I was willing to take the risk so that my first born has a sibling.

I also know that I am fortunate to have good insurance coverage and financial stability; those issues were not part of my hesitation. My hesitation was concern for putting a baby through what we all know if the NICU and the potential long-term affects.....I don't know how I would have felt about this if financial issues had been a concern. I am grateful every day for my good fortune in a full-term second pregnancy.

Joanne Pace

Anonymous said...

Joanne's comment about a wanting a sibling for her son intrigued me. Has anyone struggled with the responsibilities that might be placed on a healthy, full-term child if his or her older (or even younger) sibling has some profound medical issues? This question is not meant to be accusatory, I'm just curious about the thought process since I have not been in this position myself.

-Emily (with no kids)

Anonymous said...

Children deserve to get the medical care they need without bankrupting their family or forcing their parents to justify their right to exist.

Should the rich be the only ones who have the right to have children? Does a childless couple have the right to fertility treatments? Is it ethical to continue a pregnancy in which there is more than three, four, or five fetuses?

If there was ever a circumstance in which a person can predict with perfect clarity that a baby will be born premature, it is a multiple pregnancy. The human body was not designed to carry more than one baby to term. It is impossible for a woman to carry three, four, or five babies to term. Do we have the right to question these people? To criticize them for not reducing the pregnancy?

If we, as a society, can celebrate women for pushing their bodies to the limit to deliver in six or seven months five babies who will spend the first three months of their lives in a plastic incubator, then we cannot judge a woman for continuing a single pregnancy that could end happily or could end with a second child with disabilities.

Money always seems to be the bottom line in these discussions, but somehow that never came into my thinking when I found myself unexpectedly pregnant with my fourth child. How could I have known he would be born early, that he would spend weeks in the NICU, that his birth would be more memorable for the despair it caused than the happiness it should have created. All three of my older children were born full term...should I have been able to predict my son's prematurity?

Would I have done things differently had I known? That's like asking the parent of a child with Down's Syndrome if they would trade him for an honor roll student, or the parents of a child with dwarfism if they would trade him for a basketball player.

Instead of blaming parents for giving birth in the first place, maybe we should put our mental energy into fixing the problems that exist with the medical community instead. It does not matter why the child is here, whether the child should be here...what matters is that he is here and he needs his medical needs met without bankrupting his parents. We shouldn't have to choose between money and family...we should be able to get our children the care they need without justifying their right to exist.

Tamara Coburn said...

Struggles with the responsibilites? Yes. Every parent's time is stretched. Whether you have 2 healthy kids, 1 sick kid, 3 healthy kids with 1 sick kid and more. You adapt, you make the necessary adjustements... there's some sacrafice but we've all experienced that at some point in our lives.

I can honestly say that my children are better off for having their brother with his disabilities. As parents, we all want to teach our children to accept people that are different. To embrace differences, not to be cruel to people who are different, and so forth. You will never know if that lesson sinks in until they have encountered it. My 2 girls honestly, and with all their hearts, believe that even when my son was a baby with a wide cleft lip and palate that he was the cutest and most perfect thing under this sun. While I saw adults turn their heads away from my son, while I saw other children point/stare/giggle at my son... my girls stood by and adored and smothered him with love. They never even flinched when they saw him.

While my 2 daughters have a bigger medical vocabularly then most adults, they get just as nervous and anxious as their parents when he has yet another surgery. They do get upset at the time that I have to dedicate for various therapies, doctor appointments, hospital stays and so forth. But I don't think it's a negative thing for a child to learn that sometimes other people come first, that life is not fair, that joy and happy times can come out of the most stressful situations.

These are big life lessons for little children, but I have a sincere hope that learning these lessons early on will make them more well-rounded and able to face situations and times in their life with their head held a little bit higher. With more comprehension and understanding, with more compassion and empathy, and that they can look back on these times and know that we loved our little boy so much (all of us) that we happily did what was necessary to make his life a little bit easier.

This is, of course, an extremely rosey outlook and we've all had days where we don't believe we have an ounce of strength left. Where we just wish for a few minutes to ourselves. Where we would love to just snuggle on the couch together versus going to yet another doctor appointment. When I get frustrated at times like these, or my children do, I make it a point to schedule whatever one-on-one time with them I can. Whether it's playing a board game together, a special dinner out with just them, or whatever we have the time and means to accomplish. Even if it has to be delayed a few days, my children have definitely become more patient and selfless.

Kathy said...

We've been struggling with this question, too.

My daughter is a relatively late-term preemie (31 weeks), but with IUGR. So far, her outcome has been pretty good. However, we won't know the full impact of prematurity for many years, and I don't want to wait that long to have the hypothetical second child.

When my pregnancy went south, our ideal family size went from 3-4 kids, pretty close together in age, to one kid, MAYBE two. And far enough apart in age that my daughter could better handle me going on bed rest, etc.

I now know that I have two blood clot disorders, which was the cause of the IUGR, preeclampsia, and HELLP syndrome that nearly killed both of us. If I were to get pregnant again, I could do things differently with daily injections of blood thinners. The problem is, my perinatologist can't give me hard numbers on how likely they are to give me a healthy pregnancy.

So, is it worth another spin of the roulette wheel? There's something I could do that might give me a normal experience and a healthy birth, maybe even an un-medicated VBAC! (Can you even imagine? I can't!) But if we spin that wheel and lose... the guilt. Oooooh, the guilt. And honestly, I don't think I'm cut out for parenting two high-needs children.

But even if I don't plan to have another, no birth control method is perfect. Hormonal birth control is out of the question for me, IUDs and tubals and vasectomies aren't perfect... what if the unplanned happened? I'd welcome another baby, but what if I got sick again?

Here's where I'm going to get REALLY controversial. (Raising flame shields!) Suddenly I've gone from someone who was pro choice in theory only, because PERSONALLY I was never going to want or need one, to a staunch defender of the controversial late-term abortion.

I was able to survive a c-section, and deliver a live baby, but another few hours of my platelets dropping and I might not have been able to survive surgery. As it was, between my blood pressure and my daughter's precarious health, neither one of us could have survived labor.

If I were to have another pregnancy and develop HELLP syndrome even earlier, I could find myself in a situation where a late-term (so-called "partial birth") intact D&E would be the only way to save my life. I don't see the point in risking my liver, my uterus, and my life by waiting for the fetus to slowly die from my crappy placenta rather than quickly from a doctor's injection, just so I could say that the baby died of natural causes rather than an abortion. Yet, there are many people who would like to make that decision in the legislature instead of in my doctor's office.

An acquaintance of mine is currently pregnant with a baby who has devastating chromosomal abnormalities. (About as bad as it can get. Totally incompatible with life, no question.) She could have chosen an early abortion, but chose to carry the baby as long as she could. The right-to-lifers would applaud this choice. However, now her health is starting to be gravely impacted. If she doesn't miscarry before this pregnancy starts to endanger her life or future fertility, will she have access to the medical treatment she needs? She lives in a state where late-term abortions are still legal, but with so few younger doctors trained in the procedure, will she have quick access to it, should it become necessary?

Being obviously pregnant with a doomed baby would send me around the bend, and I honestly don't know how she's managing. My understanding is that Barack Obama supports each state's right to choose (or not!) to keep late-term abortion legal in cases of medical necessity, but that he doesn't think mental health reasons should qualify. To which I say, pppptttttthhhhh.

So, should I ever find myself pregnant again, planned or unplanned, I'd be locating all Level IV and V NICUs near me and interviewing them about their resuscitation and palliative care policies, interviewing my OB about whether she would and could give me a late-term abortion if necessary, and researching whether or not I should temporarily relocate to Canada. Cheerful, huh? Oh, and figuring out if I could make decorative patterns with the bruising on my abdomen from the anticoagulant injections. Fun times!

terri w/2 said...

Kathy;

Your observations are heart-wrenching! But so important.

I too, know of a professional gal who during her first pregnancy, found out by routine ultrasound that her baby was anacephalic (sp) - or basically had no brain beyond the brainstem (which controls heartrate and breathing). They had waited a long time to have children, and desperately wanted this baby, however, they could not go on with the pregnancy knowing there might be a chance the baby would survive (due to brainstem). .but have no capacity at all for anything else. It was the most gut-wrenching scenario any couple could face. .
They chose a late term abortion, and went on to have several healthy full term children.

I agree that although there will be flames on this issue, it is an important one, as women and couples in these situations must have choices.

And as parents of micropreemies, we too should have choices to resuscitate. .or not.

23wktwinsmommy said...

Kathy, very interesting post...taking us in a new direction, but I am glad you did. I never thought much about this topic. But you got my wheels spinning.
This woman's story really made me think, and question even Obama's stance.
http://www.rhrealitycheck.org/blog/2008/07/08/obamas-late-term-abortion-comments-ignore-stark-realities

abby said...

This post hit home since we're currently in the middle of a pregnancy-post-micropreemie (we have a surviving 23 week twin). We were only willing to try again for two reasons: 1. Hallie (our survivor) is doing pretty well and while she has some long-term feeding/allergy issues, our lives have returned to some semblance of normalcy and her needs are not ones that we cannot handle. Had things been different in this respect, we could have have imagined doing this again. Like Lori (Aidan's mom), we are concerned about the impact on our relationship, but we're trying to remain optimistic that we won't find ourselves precisely where we did last time around. 2. We'd very much like Hallie to have a living sibling. This is an irrational thing, perhaps, but the death of her twin sister made us both want her to have a living sibling. If this doesn't work out this pregnancy, I think we'll start thinking about adoption very seriously.

On the multiple pregnancy issue and IVF: I agree that it's a problem. But the cost of IVF cycles is so prohibitive and in most cases, insurance does not cover it at all and certainly not fully. Consequently, parents who are having issues with fertility take a gamble on things: they know that multiples (particularly high order ones) place an undue strain on the mom's body, but after you've tried for years and spent a fortune on other fertility treatments and none of this paid off, the thing you want most is a live baby or two to take home. Clinics do not do a good job of explaining the real risks (in vivid terms) of multiple pregnancies ending during the second trimester and consequently parents (including us) had no idea that we might end up with 23 weekers. What would help is a program that defrayed the cost of IVF if you agreed to a single embryo transfer followed by a frozen embryo transfer (this is the protocol in Australia, I believe, and is increasingly the one used throughout Europe to very good results). This would help cut down on multiples and minimize the number of babies born prematurely from IVF cycles and would probably also save insurance a bunch of money in the long run.

On Stephanie's point about Obama's position on late term abortion: wow, I read that article and was touched very deeply by it. I am not sure there's a politic way for Obama to handle this matter (at least not before he's elected!) but it really does drive home the problems related to 'strict' interpretation of maternal health. I wish this country were not so fraught ideologically and that people would realize that it is a rarity for anyone who has an abortion--particularly so late in the game--to treat it lightly.

Eleanor said...

Interestingly, New Zealand - a small country with a population of 4.1 million or so - have set rules whereby you can only implant a max of 2 embryos in a single course of IVF. You can now get 2 IVF courses here paid for by the taxpayer before you have to pay for it yourself!

ThePreemie Experiment said...

Great discussion everyone. Thank you all so much for sharing. Again, I'm sorry for not being more apart of the discussion. I feel like I'm always apologizing for my absence but life just gets so busy at times.

I do want to clarify something. I completely understand the raw emotions of wanting more children. I never meant to sound like the decision to not have more children was an easy one, for anyone.

There were YEARS that I was clinically depressed because we didn't feel right about having more children. I felt robbed. I was angry when others were having children around me. Oh, and shall we talk about what happens to your sex life when you feel depressed about not having more children?

I really did not want anyone thinking the decision, to not have more children, was easy. And, yes, I did get pregnant unexpectedly and can look at the situation from a place of peace now. While I am thankful for that, I would never have planned the pregnancy. This does not mean that I did not want my son. Nor does it meant that I do not love him. We are thankful that the pregnancy lasted as long as it did but it was a VERY hard pregnancy. It could have easily gone the other way.

Kellars Mommy said...

My husband and I are currently in the "do we try" again stage, I do so badly want another child, I lost my 1st son at 20 wks, then Kellar came at 26wks ( I had a failed tvc ) and knowing that I should have 2 little boys running around my house makes me want to try for 1 more. I have thought about how fortunate we are w/Kellars outcome, it's not typical and I know that if we were to have another preemie we may not be so lucky, but even if we were to go full term there is still a chance of not having the "perfect"outcome. Expenses...Yes the cost of Kellars nicu stay was out of this world but when I look at my little boy I don't think of what it cost to bring him home w/me, my child is worth far more than the million dollar nicu stay. It's a tough choice..

Allison said...
This comment has been removed by the author.
MommaWriter said...

This is a really fantastic discussion, Stacy. Thanks! This is one of those topics that torments me frequently. I was one of those people who didn't know why my son was born at 30 weeks. My OB didn't see any reason to think it would happen again particularly. My hubby and I were deeply scarred from our son's birth and 97-day NICU stay, but we knew we wanted more than one child, so we decided to stick to our plan to have them two years apart. I was thrilled to get past 30 weeks, but it was only 31.5 weeks before I had my daughter...born with a zero Apgar score and not altogether easy to resuscitate.

Before her birth, I had *promised* myself that I wouldn't even consider another child if I had another preemie. My husband only wanted two anyway and we had a boy and a girl, so I didn't have a lot of arguments to make.

The decision was made, but it's been such a hard one that I haven't pushed DH to get snipped. He was about to do it several months ago when I found out that a friend of mine was pregnant with her third when she'd had almost the exact same birth history with her first two (a boy and a girl as well). I would so desperately love to bring home a full-term baby and I thought maybe if the progesterone shots worked for this other woman, I'd really want to try again.

Well...they didn't and the moment I found out she'd had a third preemie (hers were much healthier preemies than mine) I knew we weren't going to have any more children.

Neither of my kids have severe disabilities, but both of them have more mild preemie issues, including my son's severe speech disorder. With the cause of their prematurity still a mystery, I have to concede that it may be a mystery, but it's not a fluke. I can't carry babies to term. I don't want to do the NICU trip again to our family or any more tiny babies.

Despite that, if there was an accident, I would do everything I could to carry another baby longer. (I would definitely *think* about termination, but I don't think I'd ever be able to go through with it.) But I'm worried that there's just something toxic about being in my body. Would a baby carried longer have more problems somehow? Would I have an earlier preemie? I know I couldn't deal with any of those things and I know I would be a very bitter and guilt-ridden parent of a severely disabled child.

For some reason, it seems like the majority of families around here have three kids these days, so now I have "just two", but I'm awfully happy with my two. And if they have some problems, I'm glad I *only* have two and I'm not spread so thin that I can't possibly spend the extra time to help one of them (as I do with all the speech therapy), or do like Stacy and pull one of them out of public school for homeschooling if necessary.

Intellectually, I'm super comfortable with my decision not to have more children. Emotionally, I still want more. It's just not going to happen.

Somewhat fortunately, my sister, who had her son at 36.5 weeks, was diagnosed with rheumatoid arthritis last year. She's on drugs that aren't compatible with pregnancy, so she may only have one child, even though I know she really wants more. It's a bad circumstance, but there are lots of people in that kind of situation and at least she's given me the perspective to be grateful for what I've got and realize I really don't *need* more.

Stacey (the one with the 'e' in CA)

Anonymous said...

TPD here. The way I see it we are driven at a basic level to reproduce. You could say it is our ultimate physical purpose. It is interesting that many here see it as a moral responsibility to stop having children after having had a preemie. Perhaps, if the cause is known and untreatable. If the cause is known and treatable with a good probability of success, then it is simply a decision. If the cause is unknown, then statistics do show that most women go on to have normal pregnancies. Life is inherently risky. Some people are more comfortable with the reality that no matter what steps we take to insulate ourselves, life is totally out of our control. It is interesting that in most of the large families I know, the parents are usually relaxed and happy and loving through all sorts of complex medical and financial crises. In most of the single-child families I know, the parents are fearful, tense, and hyper-focused on the child.

Anonymous said...

To TPD,
I am one of the parents (Mom to a 23 weeker) that will not even consider birthing another child I will explain my reasoning to you. I went into spontaneous labor and delivery with my first born at 18 weeks with no indication whatsoever. A lot of lab and visits with top notch perinatologist confirmed it to be a case of incompetent cervix. So the POA for my next pregnancy was a cerclage which was put while I was 9 weeks along then I was on modofied bedrest, having done everything right I still went into labor at 21 weeks but somehow managed 2 more weeks and ended up with a live birth. This time the doctors promise me that I am a candidate for an abdominal cerclage and only 5 surgeons in the US can do the cerclage it's that rare. To which I say NO THANK YOU> I am happy to have my son and I CAN ALWAYS ADOPT. You are right though, I am hyper focussed, tensed and fearful all the time.

Anonymous said...

my first was a 24 weeker. My second was a 40+ weeker. I'm so glad I decided to try again. My first was an unknown PROM--I just did progesterone supplements the second time around and it worked. Its a personal decision to make-you hve to ask yourself if you could handle another preemie.

Mom to Lilike Locke and Anjeni said...

With Lilike (Lily) my 1st I had very bad morning sickness for about 3-4 months. Stomach pains when I ate and then severe maternal anemia at 35 weeks. Lilike was born at 39 weeks on June 25th 2003 weighing 3.2kg and 49.5cm she was born at Noarlunga Emergency in 1 hour and 30 mins. Her apgars were 7and 9. At 1 hour old. She was breathing fast with rib retractions. Given 23-28% supplemental 02 overnight. Fill in nurse did not want me really hanging around in NNU admission area that night or early morning with me just looking at my daughter. Perhaps she felt I might stop Lilike from getting the right care she needed. And at least without me there. There would be no distractions in Lilikes care. Pale since birth she was cool but she did arrive the NNU in ambulance with me holding her and she had no clothes on but a small thermal blanket born in winter a sunny sky and breezy cool day. She was treated on 7 days of iv antibiotics due to high white cell count on day of birth with breathing distress read as possible signs of sepsis. 7 days in NNU. 2 days roomingin. Spent 9 days in hospital. Lilike was fed formula and EBM via bottles with fast flow cherry teat. Demanded feeds taking them all.

Locke 7 pounds 4 0z. Textbook pregnancy and carefully managed rapid birth born May 29th 2006

Anjeni 7 pounds 13 0z 52cm. Had a few months of bloody diarreah every day. 1 slightly low iron level blood test. All other blood tests normal iron levels. Born very healthy with apgars of 9 and 9.

tbonegrl said...

My twins, a product of IUI triggered with only 2 follies, were born at 32w 4d. I went into premature labor at 28w as my placenta started to abrupt, and then it fully abrupted at 32w. My son Jack had an apgar of 3. We all almost died during the emergent surgery/csection that followed the abruption.

I have gone back and forth on this issue and I believe that we will one day try again. I fear a placental abruption again, and know there is a risk. My OB seems to feel that the chances were exacerbated by my twin pregnancy. I am afraid I will not lie.

I have PTSD from the delivery and do plan to seek therapy before we try again. If we ever need to go the IUI route again, I will not trigger any more than 1 follie. I fear another multiple pregnancy and the ramifications it has as far as bringing another premmie(s).

Anonymous said...

Is anyone on this site a preemie? I'm in my 40's and I was a preemie- (2 pounds and very very early) I was in an incubator for 6 months and I have a twin brother who was in for 4 months.

I started haveing autoimmune symptoms 6 yrs ago and almost passed away because of them- my doctors and I are STILL trying to figure out which auto immune disease I have and it is getting old to say the least. Thank God I have insurance through my hubby- I would be dead if not. I've have bood clots- eye problems-swallowing/breathing problems and a host of other things - and I've been to 20-30 docs before being sent to the C.Clinic where they actually treated me like a human being with a real disease.

I had been told by doctors that I was dreaming all of this and that since I was a woman- I was making the whole thing up. They were men of course, and I would love monthing than to kick their ass for not taking me seriously- but I do think that how you are born has s serious effect on diseases you get later in life.

Has anyone else experienced this type of senerio>

I could use all the help and support I could get.

Thanks