Saturday, June 2, 2007

Pregnancy After A Preemie


I've written a little about my 2nd pregnancy here.


I know that this subject is the source of so much pain for parents who want more children. I wish I could say that there is some magic pill that can ensure your next pregnancy will be different, but sadly, this isn't the case. There is no magic pill. I will, however, share my story in hopes that the information will help in whatever research someone else is doing.


With my 1st pregnancy (Paige) my water broke at 23.0 weeks. I was coughing (had bronchitis) and felt a huge gush. At the hospital, the fluid was tested and blood was taken but the reason for PROM (premature rupture of membrane) was never found.


In the first few years after Paige was born hubby and I saw specialists that basically told us that the risk was very high that it would happen again, since the cause was never found. Hubby and I could never bring ourselves to have more children. The fear was too great. We have friends who are preemie parents that told us that we should just "go for it" like they did. Unfortunately, I am not the "just go for it" type of person. I felt that it was selfish to bring another child into this world with the risk that he/she may be born premature.


The decision to not have any more children was not an easy one. There were times when I was feeling courageous and hubby was not, and vice versa. I seriously worried about our marriage at times. Then I decided that I wanted to try again. Hubby did not share my desire. At all. I begged. He shared valid concerns and reasons not to have another. I cried.


When one partner has an intense desire to have another baby and the other one does not... it does a number on your sex life!!


Finally (it took years), I made up my mind to live with the fact that I would not be having any more children. It took some time but I was actually ok with the decision.


Then I got pregnant (huge surprise). After I left the doctors office with the news, I immediately went home and started researching (no surprise there). I read up on all of the research and studies (there aren't many) about subsequent pregnancies after having a preemie. I felt more scared than I had ever felt in my life.


The first thing I did was join a group designed around being pregnant after having a preemie. It was very helpful. Even if you are thinking about having another baby, the information is wonderful.




It was on the above mentioned group that I learned about 17alpha Hydroxyprogesterone. (17P)


At my next OB appointment, I brought up my concerns/fears about being pregnant. She told me that there was nothing that could be done to prevent PROM and if I had this child early I shouldn't worry since babies were being saved as early as 21 weeks. I asked her about 17P and she said that I should just stop researching.


Not the doc for me.


My next OB was a high risk doc. She was awesome. She presented the info on 17P at my first visit, before I could even ask her about it. She told me that the shots were showing promise for women who had preterm labor (PTL). Even though I had PROM and not PTL, she felt it was worth a try since I could have had PTL and not even had known it (I did have severe back pain that all docs ignored).


OB also felt that she did not want me to go past 36 weeks due to the risk of uterine rupture. I had a c-section with Paige (at 25.5 weeks) and she felt that my uterus was sewn at a time when it never had a chance to stretch to full term. She was very worried about me rupturing. She told me that she had seen women who ruptured and both the moms and babies died. I was not happy about this. I wanted a full term baby and intended on arguing about this all the way to 38 weeks. Her and I agreed to not talk about it until I got closer.


I had the weekly 17P shots starting around week 16 and continuing through week 34. At the time, the research was showing a 36% reduction in premature births. I was willing to do anything.


I developed gestational diabetes very early. I was able to control it with diet until the end when I needed Glyburide.


Despite keeping my sugar levels under control, I still developed polyhydramnios (too much amniotic fluid). It was discovered around 29 weeks. It was always just barely over the cutoff.


Around the same time I also started PTL and was dilated to 1cm. I was put on bedrest.


Next week PTL continued and I started to dilate more. I was put on Procardia (via pill) to help stop the contractions. The only problem was that it is a blood pressure medicine and I have chronic LOW blood pressure. I was in a constant state of dizziness.


At 32.6 weeks my contractions were still coming at a rate of 6 - 8 of them an hour. My doctor told me that she would be surprised if I made it to 34 weeks. She wanted to schedule my c-section for 34 weeks (due to her fear of uterine rupture). I refused and asked her to do a fetal fibronectin test http://www.fullterm.net/html/fullterm_faqs.htm Basically the test measures the amount of fetal fibronectin in the vagina. If it is not present then the likelihood that you will deliver within 7 - 10 days is less than 1%. She didn't want to do the test because insurance may not pay for it and because there are false positives. Since she was sure I wouldn't make it to 34 weeks, I felt that we had nothing to lose. The test came back negative and she agreed to hold off with scheduling my c-section.


At 34.5 weeks I was dilated to 3 and 25% effaced. My doc was no longer comfortable putting off the c-section. I pleaded my case. My contraction were less and my fluid level was lower. She agreed to wait for a few days.


35.2 weeks I was 4cm. The doctor put her foot down and scheduled my c-section for 2 days later. She ordered an amnio to check his lung function. She said that if his lungs were fine then she would do the c-section. If not then she would put me in the hospital for a few days.


35.4 weeks I went in to the hospital for the amnio. That morning I told her something wasn't right. I was having an odd pain on my right side. It felt like nothing I had ever felt before. It was like a tennis ball was in my uterus, trying to come out my right side. The amnio showed his lungs were not developed. 2 of the 3 markers were not there. OB told me that she wanted to wait for a few days.


I refused. Now remember, I'm the one who was adamant about going to 38 weeks. But, something was not right. At all. I freaked out. My baby needed to come out now and I knew it.


She checked me and I was dilated past 5. Between that and the pain I was feeling, she agreed that it was time.


My precious boy was born at 35.4 weeks weighing 6 lbs 10 oz. He came out screaming, breathing on his own and never needed any oxygen. Hubby and I cried. OB cried. She said, "You did it!" I replied, "We all did it!" It was the most incredible moment of my life. Hearing my son cry, instead of hearing the 30+ medical staff that was trying to save Paige, was so peaceful. I never thought I would have a (almost) full term baby. Never. My son was a surprise pregnancy, one that we never planned. Oh but what a gift!


Oh, and that odd "tennis ball" feeling.... During my tubal (you better believe I had my tubes tied!) my OB leaned over the curtain and said, "That feeling you had that caused you to strongly persuade (she was being nice-I became a bitch and pretty much forced her to do the c-section) me to take him out was your uterus just about to rupture. If we had waited any longer, it wouldn't have been a good outcome."


I cannot tell anyone whether it is a good decision to have another baby after you have a preemie. It's one that is a very personal decision. Other moms have told me that it would be healing. I'm not sure that is the way I would describe it. I'm not sure the way to heal yourself after having a preemie, is by having another baby.


I also am still on the fence about the 17P shots. They are supposed to prevent PTL, which I had for a good portion of my pregnancy.


But, what I can suggest is that you find a doctor that you have a great relationship with. One that will respect your wishes and not dismiss any concerns you may have.


Also, listen to your body. If something does not feel right, get the docs to listen to you. If you are being ignored, change docs!


With my first pregnancy, I was horribly sick, all of the time. I clearly had polyhydramnios with Paige. At 3 months I was measuring the size of 7 months! I clearly had diabetes with that pregnancy too but no one listened. All I ever heard was, "oh, is this your first pregnancy?" or "Welcome to the pains of being pregnant."


And, finally. If your partner does not want more children and it is causing stress in your marriage, get help. The divorce rate in preemie parents is so high and I feel this is one of the causes. Pregnancy after having a preemie is scary for all involved.


If anyone out there has more medical information to share on ways of preventing future preterm births, please share it in the comments section. My story is only about PROM and PTL. There are people out there searching for answers and your story may help.


















38 comments:

abby said...

Stacy,

This was a great post and we'll seekit outagain if and when we try to give hallie a sibling.

Doc's Girl said...

Great post...I was reading in suspense...! :-D

20somethingmommy said...

I am so glad that somebody is talking about pregnancy after preemies...the idea of getting pregnant has so completely scared me that I will be candid here (you don't know me, after all ;) and tell you simply that my marital life has already been GREATLY affected by it. But for now that doesn't seem to bother either of us.

Anyway, thank you for this post. You have touched on some things in here and in previous posts that I honestly thought weren't felt or shared by anyone but me, until I read them here. And it makes me feel a little stronger every day. Maybe not so much because I'm "healing" from my preterm nightmare, but more because you have validated my feelings, and I know it's okay to be this way. At least for now. :)

terri w/2 said...

Great post PE! Unlike you, I never did get the courage up to try again. With all the lifting of my daughter (who is in a wheelchair d/t CP caused by prematurity) I thought that this would be a huge detriment to carrying FT. Besides, one of my aunts had 2 sets of twins, and I just didn't want to take the chance of landing in hell (the NICU) again.

Has ANYone ANYwhere ever done research on how many preemies are born during allergy season? Both my friend and I delivered our preemies during the height of allergy season here in the upper midwest, and it has caused us to wonder of some type of systemic allergy trigger may have caused our PT delivery.

The Preemie Experiment said...

Thank you all for the positive comments.

20something wrote: "You have touched on some things in here and in previous posts that I honestly thought weren't felt or shared by anyone but me, until I read them here. And it makes me feel a little stronger every day."

I'm glad I could help with validation. You'd be surprised at how many people share in the thoughts that I post. I get emails all of the time with supportive comments from preemie parents who feel guilty for their feelings. It's hard to separate the feelings of joy that your babies are alive with the ones of honest feelings. I'm thankful for my children but that doesn't take away from my true feelings.

On a side note... out of all of the emails that I get, this topic (pregnancy after preemie) is the most talked about. Parents are looking to me for the encouragement to try again. I cannot offer that.

Terriw/2 wrote: "Unlike you, I never did get the courage up to try again."

Oh no, no courage here. Quite the opposite. My son was a HUGE shock. Hubby and I were doing almost everything we could to NOT have another one. When I started having morning sickness, extreme emotional outbursts and low abdominal cramping I went out and got a pregnancy test. Both of them (different boxes) came out negative. I was convinced something else was wrong with me. I almost threw up when the nurse at the OB's office showed me the positive pregnancy stick.

We only had sex once that month (how's that for sharing my life to the world-told you my sex life was crap back then) and it was 5 days before I should have gotten my period. No where near ovulation time.

I never thought I would make it through pregnancy. I was supposed to be on bedrest but unfortunately Paige's care couldn't be put on hold. We still averaged a specialist a week (give or take) along with medical tests. It sucked.

I've had a few people give me grief for tying my tubes. But, there was no way I was going to have another surprise. My love for my son is so incredibly deep. I get teary, to this day, when I am with him. But, that doesn't mean I need to do it again! lol

I am just the mother said...

PE,
What's wrong with tying your tubes?

nancy said...

I want to know more about the rupture on the Uterus. I have never heard about it... I want to know if I am at risk....

The Preemie Experiment said...
This comment has been removed by the author.
The Preemie Experiment said...

I am just the mother wrote: "PE,
What's wrong with tying your tubes?"

Boy oh boy did I catch crap for this one!

First, my family is Catholic (I no longer attend church-long story). Enough said there.

Religious friends told me that I was sinning. I received emails from people (that I didn't know-church members of friends) that were praying for me.

I cannot even begin to tell you how many people told me that I shouldn't have done it in case we wanted another one. I was and still am, very confident with my decision. I do NOT want to be pregnant any more. I am almost 39 years old. Every pregnancy would end with an early birth. No thank you. If I feel the intense need to add more kids to our family, I'll adopt.

Then there were the people who told me that I shouldn't do it in case one of my children got sick and I needed to have another baby to save them. I won't even comment on that one.

Then there were the people who told me that I would never feel normal, and may not even feel like a woman, again. Well, to those people... my sex life is 100% better now that my tubes are tied.

(to those who are going to email me and tell me that I still can get pregnant-I'm already aware of this)

The Preemie Experiment said...

Nancy wrote: " want to know more about the rupture on the Uterus. I have never heard about it... I want to know if I am at risk.... "

Hi Nancy,

From what I understand, the risk changes based on the way you delivered in the past.

For me, I had a classical c-section.

I have also heard that it is less likely to happen in people who have gone full term with their prior pregnancies.

Buddhist Mamma... anything you can add here??

I am just the mother said...

PE,
I know all about the abortion issue with the Catholics (am a disillusioned one myself) but didnt realize that tying of the tubes was a mortal sin. Please, people need to worry more about their own business and health issues. :)

daedalus2u said...

Stacy,

Thank you for sharing your symptoms observations during your pregnancy. I need to read and think a lot more, but many of the symptoms associated with preterm birth seem to me to be related to low NO.

I think it is pretty clear that low NO is related to gestational diabetes, preeclampsia, and placental insufficiency and anemia.

I think it is also related to polyhydramnios, steroid abnormalities (they might not be measurable because it is local levels that "really matter", not what is in the blood) especially hyperandrogenic abnormities.

It might be related to PROM, PTL and risk of uterine rupture.

Helen Harrison said...

To Daedelus2u:

Most preterm labor and/or PROM (and a lot of what is attributed to "incompetent cervix") is associated with, or caused by, infection and inflammation. Somewhere between 60% to 80% of all very preterm births (before 33 weeks) are due to infection.

These infections can arise from elsewhere in the body. For example, gum disease, and the organisms associated with it, are implicated in preterm labor and delivery.

I'm guessing from what you've told us that vulnerability to infection may also involve NO imbalances?

daedalus2u said...

Yes all of those infections do relate to NO. An important part of what regulates bacteria in the mouth is nitrate in saliva. Saliva concentrates nitrate (which is mostly from green leafy vegetables like lettuce) about 10x over plasma. There are bacteria on the tongue that reduce that nitrate to nitrite, which can reach about 2 mM/L in saliva. That is a lot. When that saliva is swallowed, the low pH in the stomach decomposes it and releases NO. That NO goes somewhere (the details are not known), eventually gets oxidized to nitrate and is then recycled in the saliva.

The standard treatment for bacterial vaginosis is metronidazole, which is an NO donor. Normal vaginal flora (the lactic acid bacteria) are extremely resistant to metronidazole (as are "my" bacteria) as well as other NO donors. One of the best known commensal vaginal lactic acid bacteria is Lactobacillus crispatus, which does make H2O2. The Lactic acid bacteria in yogurt are not necessarily the ones best adapted to be human commensals.

BV and premature delivery is usually characterized by higher vaginal pH, (normally it is less than 4.5 from lactic acid bacteria). The bacteria raise the pH by cleaving urea into ammonia. The combination of lactate, nitrite and hydrogen peroxide is ~100x more toxic to E coli than is any one alone.

I suspect that the "normal" vaginal flora does contain "my" bacteria, they simply have not been recognized yet. I suspect that the there is substantial synergy between the lactic acid bacteria and the nitrite producing bacteria. Lactic acid bacteria can produce some nitrite from nitrate, but "my" bacteria can produce orders of magnitude more. Normally, the low pH would actually inhibit them because they absorb ammonia as ammonia, and at low pH ammonia becomes ammonium and is unavailable. If there was an infection of bacteria that hydrolyzed urea to ammonia, it would create a local region of high pH where "my" bacteria would metabolize the ammonia into nitrite, lowering pH.

"My" bacteria are quite sensitive to alkyl-benzene sulfonate detergents which can kill them at ppm levels. Nonoxyl-9 may be quite toxic to them also.

Helen Harrison said...

Daedalus2u,

Can you tell us more about your bacteria?

How did you find them in the first place? How do you "cultivate" them? How can they be identified? Has anyone else described them or carried out research using them? Anything published?

What antibiotics take them out? With what other bacteria do they happily co-exist?

How does one acquire them?

Do you recommend bacon and other cured meats as an NO source (in addition, of course, to green veggies as the *major* source)? I've heard that bacon, etc., can lead to stomach cancer.. is this true and, if so, how does one balance the risk/benefit?

I hope you are in touch with the March of Dimes about all of this.

daedalus2u said...

Helen, "My" bacteria are quite common, being found in just about every soil, and every natural source of water including rivers, ground water and the ocean. They are responsible for the first step in the process of nitrification, the oxidation of ammonia into nitrite. Another type of bacteria takes the nitrite to nitrate.

They are very well known in soil chemistry and waste water treatment chemistry. The are obligate autotrophs, that is they are unable to metabolize organic compounds and use them for energy or to grow. Essentially all organic carbon they derive by fixing CO2 using the energy derived from oxidizing ammonia to nitrite. I think they are completely incapable of causing an "infection" because they don't have any enzymes to metabolize animal-derived compounds. They simply have no virulence factors.

I am the first to suggest that they might be commensal organisms, and I have found them on the surfaces of multiple organisms, including clams, mussels, lobsters, turtles, earthworms. They are probably commensal on most plants.

I figured out they were important when a friend asked me why her horse rolled in the dirt in March, before insects come out. I reasoned that it was to get the "right" bacteria on its skin before summer so that its sweat wouldn't peutrify. A major component of sweat is urea, bacteria can hydrolyze urea into ammonia which is bad, the bacteria in the soil that metabolize ammonia are the autotrophic ammonia oxidizing bacteria which eventually take it to nitrate which is benign. I reasoned that if getting the right bacteria on its skin was important enough for horses to evolve that behavior, it must be really important, and perhaps important for other mammals too. I looked in the literature, found nothing associated them with any organisms, isolated some from barnyard soil, reasoned that in the "wild", humans would be unable to prevent a biofilm of these bacteria from forming (humans in the "wild", never bathed in their entire lives).

So I decided to start my "science experiment", by putting some on me, establishing a biofilm of these bactera and then not bathe and "see what happened". That was 5 years ago (this month). My health has never been better. A lot of the life-long chronic disorders that I have had are now remarkably better.

The most striking changes have been in my mental health. I have Asperger's, and it is remarkably better, as is my depression, anxiety and PTSD.

I am not in contact with the March of Dimes, having Asperger's, it is really hard for me to do interpersonal stuff. What I have is pretty "far out", and people are simply not willing to spend the time to see if what I am saying makes sense or not. The NO research field is very complicated and very fragmented. There are a lot of misconceptions in it because some of the experimental work is quite challenging, and the NO pathways are so "coupled", that it is virtually impossible to perturb them artificially. I have made tremendous progress in getting to senior researchers at the highest levels, but getting funding to actually do stuff is quite another matter. I am not at an institution that has the capability of doing the kind of research that is necessary, or even of applying for grants to do it.

Research funding these days is so hard to come by, that most every granting agency has 10x or more proposals than they can fund. It is extremely difficult to fund one that is "far out" under those circumstances. It is perceived to be "high risk". What that means is that there is a "high risk" that the reviewers will appear to be foolish if the project fails.

I have been growing these bacteria in my basement for about 5 years now, using distilled water plus minerals plus ammonia. The only organic is from what they make themselves by fixing CO2. Not much else can live under the conditions I have them at.

If you get me your email I can send you some of what I have written. If you leave a comment on my blog with a return email, and then delete it, I will get the emailed comment but the spammers won't.

The Preemie Experiment said...

I am just the mother said...
PE,
I know all about the abortion issue with the Catholics (am a disillusioned one myself) but didnt realize that tying of the tubes was a mortal sin. "

It's against the churches "rules" because it is a form of birth control.

Katie said...

This post, and the one you linked to, are excellent posts. I wish I would have been able to read them several months ago.

My own preemie, 24 weeker who died after 98 days of life, was also born early due to PROM, the cause of which was not found. After his death, which had been preceded by a miscarriage and a stillbirth, I absolutely did not want to be pregnant again. No more babies (I have one daughter, a healthy 33 weeker, and an adopted son). The risk of another preemie was too high. My body and my heart couldn't take another months-long NICU stay, another loss...

I wanted my tubes tied. My husband was adamantly against it (he wanted more kids). I will echo what you said about if your partner and you are on different sides of this issue - get help. Hubby and I ended up separating for six months over this issue (and others, but this was the biggie) - eventually got back together but certainly not without help.

And then - surprise - I was pregnant. I felt like my world was crashing down around me again. I sat on the news for a few weeks, until my husband started suspecting. I did not want to be pregnant. I was devastated, and still grieving my lost son...but determined to come out of this pregnancy positively.

I also had the 17P shots, though I, too, had two bouts of pre-term labor. A couple months of bedrest later, and then the baby was *really* ready to come, nothing stopping this kid this time. I successfully completed a VBAC (which I hadn't expected to be even allowed to attempt) at 37 weeks, not quite my goal of 38 weeks but certainly good enough when it got me my healthy boy. And *this* time, this was absolutely my last pregnancy. In fact, the only downside of my VBAC was the loss of the opportunity of doing a tubal with the c-section I'd planned on.

In your post about your second pregnancy, you mentioned you did not want mag sulfate. May I ask why? It successfully stopped my PTL both times this recent pregnancy and I'm just curious.

Helen Harrison said...

To Daedalus2u:

My email is already pretty public, so:

Helen1144@aol.com

I remember reading recently, I think it was in _Science News_, about a type of soil bacteria that could cure depression. I'm wondering if these could be your microbes?

Now, off to do some gardening!

daedalus2u said...

I saw that article. No, those are not the bacteria I am working with. Those are Mycobacterium vaccae, which while nominally non-pathogenic, still can cause disease but mostly in immunocompromised individuals. They are mycobacteria, the same type of bacteria that cause leprosy and tuberculosis.

The mechanism by which these bacteria have effects is unknown. The acute immune system stimulation they induce with these bacteria is prompt, and likely involves induction of iNOS, and an increase in NO levels. Increased NO during septic shock does increase ATP levels in muscle, it likely would in the brain as well. What ever the agent is, it must pass through the blood-brain barrier. There are some immune system molecules that can do so.

The immunological effects on the nervous system that they observed are prompt effects. I suspect that the effects would not be effective in the long term. That is, I suspect they are an acute effect associated with an acute response to an immune system stimulation. You can't treat a chronic condition acutely. The antidepressant effects that I have observed with "my" bacteria are long term. I think the two effects are fundamentally different.

The bacteria I am working with, the autotrophic ammonia oxidizing bacteria have never been reported to cause any infection or disease and it is likely that they cannot do so because they don't have any virulence factors, they generate no toxins, and are unable to metabolize any animal derived organic compounds for either energy or growth. They are unable to grow on any media used to isolate pathogens. I think they cannot cause an infection, even in immunocompromised individuals.

My perspective is that "depression", is a generic aversive mental state brought about by diverse malfunctioning of multiple pathways. I think if you compromise brain metabolism, you will ultimately get some form of depression. It is an aversive mental state, to condition organisms to avoid stimuli that make them depressed. In the elderly, vascular depression is well known, depression that accompanies a decline in vascular activity in the brain. The selective serotonin uptake inhibitors (SSRIs) work by inhibiting the uptake of serotonin. Serotonin is synthesized, stored in granules and then released when that neuron fires. The serotonin is then both degraded and taken up to be used again. By inhibiting the uptake, the serotonin level remains higher for longer. Usually it takes some time for antidepressants to "work", and when one goes off them, there can be definite "withdrawal" symptoms. I suspect that what is happening is that whatever regulates the balance between serotonin release, and serotonin receptor activation is modified by the higher serotonin levels, and the number of serotonin receptors is reduced. This has the effect of reducing metabolic load on that neuron because fewer serotonin receptors need to be synthesized (at a cost of ATP), fewer serotonin receptors need to be transported out the axon to the synapse (at a cost of ATP), less serotonin needs to be synthesized (at a cost in ATP), and less serotonin needs to be uptaken (at a cost in ATP). The neuron can now work better because its metabolic demand is now better matched to its ATP supply (determined largely by NO).

My personal experience with antidepressants is that many of them did work for me, but they stopped after a while. My hypothesis is that many of the specific mechanisms are under feedback control, and that eventually that feedback brought my metabolism back to where I was depressed. Now, I think I have corrected the insufficient ATP on the front end, and so there isn't any metabolic disruption to "fix" pharmacologically. I have started tapering down my antidepressants and expect to eventually go off them. I have been on them for more than 20 years.

Christie said...

oh goodness, i cried throughout your post. congratulations on your wonderful little boy! i had a 34 weeker last year and surprise! found out i was pregnant when he was 11 months old. was definitely not ready for that. I had actually had told my husband i didn't want to try again yet and probably wouldn't for a while, but he so was and i guess i kind of caved (even though it really was a surprise). i am scared to death,of course your experience was very different than mine, my water broke unexpectedly also. anyway, i start taking the shots next week but haven't really found any reason not to. thanks for writing about this. i truly believe we know our own bodies. i vow to go 41 weeks this time around-- fingers crossed! but i'll be praying the whole way.

Helen Harrison said...

FWIW, I was progesterone baby 60 years ago -- also a DES daughter-- and it turns out both drugs were unnecessary.

It was discovered, after mom had 4 term babies, 4 late miscarriages, and a hysterectomy, that she had a bicornuate uterus. If a baby implanted in the small side of her uterus, it miscarried; if it implanted on the other side, the baby went to term.

I went on to have one preemie (due to food poisoning from listeria) and one 41-weeker after a pregnancy complicated (at the very end) by PIH (no preeclampsia, however).

Stacey said...

I think it's interesting that anyone would suggest that having another baby after having a preemie would be therapeutic. Sure. It might be..if you carried to term.

In my case, I had another preemie (my OB did the FFN tests, but the always came out negative). I had been *so* sure that I'd recognize the signs of preterm labor if it happened to me a second time, but it was totally different the second time around. I was absolutely devastated.

Although I made it to 31.5 weeks with my second, she was born with a 0 Apgar, her first few days were very uncertain and her long-term outcome pretty sketchy. I was very close to suicidal in the weeks after her birth. Talk about needing help! Thank goodness I got some!

Even now, I think about having another baby...just so I'd have a chance at a "normal" pregnancy. But I know it wouldn't be normal and I'm pretty sure another trip to the NICU would just kill me. I kinda want it...but for all the wrong reasons! I'm not sure I'd even survive 3 kids! : )

Stacey (the one with the 'e')

Anonymous said...

I may have another child but I won't carry it. I will have a surrogate or adopt. I never want to be pregnant again! My son was born at 23 weeks and died shortly after birth, my 2nd was a miscarriage and my 3rd a 24 weeker. She survived and came home after 125 days in the NICU. They can't figure out why I go into preterm labor. I've had all the tests with no results. Even if they promised me a full term baby I would never do it. Mentally I could never go through a pregnancy again, too many very bad memories. It would be a 9month panic attack.
I've been critized by this point of view (of course by friends and family with full term, healthy babies). The reason I hear most is that my daughter shouldn't be an only child, that she *needs* a sibling. So not only is there a stigma attached to children with disabilities, as I'm finding there is alson one to only children. You just cant win.

Anonymous said...

I'm hate that people who haven't been in our shoes would give all sorts of unwanted advice about future pregnancies. Some think it's wrong not to try, and others think it selfish to try again - you can't win.

There are times that I want to have another baby after having a 24 weeker. I still stare at women with their big pregnant bellies with longing and sadness. I am still in a lot of emotional pain, anxiety and sorrow. I still feel so much guilt at not being able to carry full term (and it's been over a year). I blame myself every time my daughter has to endure anything that a healthy full term baby wouldn't have to endure, even though I had excellent prenatal care blah blah blah. I hope I get over that guilt one day.

After being in the NICU for months, I know of too many ways a pregnancy can go horribly wrong - even at full term. It's too scary and emotionally painful to think of the many ways the pregnancy and delivery could go wrong. I can't wait for the time someone tries to judge me for my decisions because I'm going to go off. How dare they, having never walked in my shoes.

H

Anonymous said...

This is a great post... and I am happy for your success at carrying your son to 35-4.

But I am wondering, you often talk about your advocacy- and I am wondering, what is it for? I know you wish to educate the masses about the real side of prematurity, and I respect that, I do. But what end purpose is in sight? The awareness you deserve? The end to biased coverage of "miracles." Convincing parents not to resuscitate their preemies? You've mentioned Helen Harrison as a "Pioneer"- of what? Shouldn't the objective be preventing prematurity- and isn't that what the March of Dimes is for? And why(yes, I've read through everyting in your blog)- do you/your readers dislike the ambassador families w/ good outcomes.

Please don't take this post as a flame against you or your movement- it isn't. It's not that I disagree, it's that I don't understand.

I guess I just think the parents should have the final say in saving their preemie.

-Anna

terri w/2 said...

Anna said:

"But I am wondering, you often talk about your advocacy- and I am wondering, what is it for? I know you wish to educate the masses about the real side of prematurity, and I respect that, I do. But what end purpose is in sight? The awareness you deserve? The end to biased coverage of "miracles." Convincing parents not to resuscitate their preemies? You've mentioned Helen Harrison as a "Pioneer"- of what? Shouldn't the objective be preventing prematurity- and isn't that what the March of Dimes is for? And why(yes, I've read through everyting in your blog)- do you/your readers dislike the ambassador families w/ good outcomes."

Anna;

For me personally, advocacy is desperately needed because prematurity is just not considered a serious issue in the eyes of the media. Everything is eroneously "miracle-based."

Our children are suffering - suffering through the NICU experience (one of my daughters had over 500 heel sticks and a surgery without anesthesia during her 5 months NICU stay). Our children are suffering after the NICU experience due to many varied disabilities - more often the case than not. .cerebral palsy, mental retardation, mental health disorders, blindness, seizures, etc etc.

Currently if the average person were stopped on the street and asked about 1 pound preemies, they would most likely think that everything being done is wondrous and that these babies survive and are normal. Most are not normal below 26 weeks gestation. Families are in desperate need of help in raising these impaired survivors. The divorce rate among families of disabled children hovers somewhere around 85%. Mothers of impaired preemies are forced from the workforce and often into near-poverty due to the necessity of caregiving of their child at home. What a huge unknown women's issue!

The March of Dimes - don't get me started! Ok, I'm started. . .back in the '90's, nearly everything generated by the MOD centered around mothers on drugs and smoking as the cause of prematurity. They even went so far as to publish pictures of baby footprints - one large, one tiny and the caption read "guess which mother smoked (or did drugs) while she was pregnant". .it was SO wrong to peg every mother of a preemie as a smoker or drug user when many preemies are born for reasons that are uncontrollable - twins, medical conditions, and nearly 50% are preterm for no known reason at all. Every woman should be made aware of the danger. The MOD has created a false sense of security among pregnant women as well as needless finger-pointing toward preemie mothers who are already dealing with such emotional pain. Then, there are the poster families, now called "ambassadors" . .carefully selected normal children of extreme prematurity who do not represent the true picture. Again, it tells the average person or pregnant woman - no need to worry here - technology that we support is saving babies who are now all leading perfectly ok lives, aren't we great!

The truth is far different. Because they are not telling the truth about our families, our families needs and most of all our children's needs are hidden from public view.

And yes, parents should have a choice in resuscitation of marginally viable infants. After all, it is us who are the ones providing for a lifetime of care.

The Preemie Experiment said...

Anna,

No offense taken. Actually the way you asked your questions is one of the nicest way I've ever been approached.

I am being pulled in quite a few directions but will be answering soon. I will be making a post out of your question and my reply.

Please check back.

Stacy

Anonymous said...

Will do.

-Anna

Helen Harrison said...

To Anna who said "You've mentioned Helen Harrison as a "Pioneer"- of what?"

Whether I am a "pioneer" or not is for others to decide, but I came to parent advocacy about 30 years ago after our son was born prematurely.

Alone, or with a few others, I did and said many things for first time, speaking from the vantage point of a parent of a prematurely-born child. Many other parents and professionals have helped along the way, most particularly my dear friend and mentor, the late Dr. William Silverman, the "father of neonatology."

I wrote _The Premature Baby Book_ for parents of premature babies (published in 1983 by St. Martin's Press) and was a founding member about the same time of "Parent Care," the first international support organization for parents of premature babies. during the next decade, I wrote for several parent publications (Twins magazine, for example) and published in several medical journals (NEJM, for example) on issues having to do with prematurity.

In 1992, with Dr. Jerold Lucey, editor of _Pediatrics_, I helped organize the first-of-its-kind conference between parents of prematurely born children and neonatal professionals.

As a result of this conference, the first-of-its kind article by a parent was published in the journal _Pediatrics_ [Harrison H. "The Principles for Family Centered Neonatal Care"_Pediatrics_1993;92:643-650]

Together with Jill Lawson, I was the first parent to speak out in a national publication against the widespread practice of unanesthetized surgery on preemies (see Rovner S, "Surgery without anesthesia: Can preemies feel pain?"_The Washington Post Healthtalk_pp7-8, August 12,1986.)

I was an early opponent of postnatal steroid therapy for preemies. I informed parents about steroid use and abuse in the NICU (and in high risk preganacy) on the Internet and in published articles and talks: (for example, "Preemies on Steroids? A New Iatrogenic Disaster?"_Birth_2001;28:57-59)

I am currently one of the moderators of the Internet group NAROF (Neonatology and the Rights of Families) and I am highly concerned about the apparent epidemic of brain damage/autism in our preemies. I am trying to interest autism advocacy groups in looking at the possible connections between autism and prematurity or prematurity-related treatments and toxicity (for example, use of steroids).

To my knowledge the March of Dimes has not been involved in any of these issues.

Briefly, what I advocate is this:

1)Open, honest and complete communication between parents and NICU professionals on medical and ethical issues.

2)Parental access to rounds discussions concerning their baby, access to their baby's chart, and more generally access to the same facts, and interpretation of those facts, as the staff, including knowledge about uncertainties, dangers, and alternatives to proposed treatments.

3)The right of fully informed parents to give or withhold consent for procedures in situations involving great uncertaintly, high mortality, morbidity, and extreme suffering.

4)Information on pregnancy outcomes as a part of prenatal care and the opportunity for expectant couples to compose advance directives stating what they want done (or not done) in the eventuality of an extremely preterm birth.

5) Acknowledgement and alleviation the pain of infants in intensive care.

6) An appropriate neuroprotective environment for babies in the NICU (i.e., developmental care).

7) Ensuring the safety and efficacy of neonatal treatment through randomized controlled trials of treatments and use of evidence-based medicine in the NICU.

8) Nursery policies and programs that promote parenting skills and encourage maximum involvement of families with their hospitalized infants-- particularly help with lactation.

9) Meaningful long-term follow-up for all high risk NICU survivors.

10)A public and professional understanding that critically ill newborns can be harmed by overtreatment as well as by undertreatment; laws and treatment policies based on compassion; An awareness of the needs of NICU survivors with disabilities with adequate public support for them and their families; a decrease in disability through universal prenatal care.

Anonymous said...

Helen--
Thank you for enlightening about your mission. I admire your resolve in parental involvement and certainly agree with the things you listed. I had no idea a neo would perform an unmedicated surgery and am horrified by the thought.

I guess I consider myself moderately educated about the effects of prematurity--I cringed with horror when I heard about sextuplets recently born here in MN at 22w6d (today, in fact)--I read blogs, have done research on the health issues, etc. And I have considered a career in neonatology after nursing.

The many things you have advocated for that you shared with me--your efforts must be working b/c most parents whose blogs I read who have young preemies seem very involved in their care.

I, BTW, am a big bfing advocate. Again, thank you for opening my eyes. You are an amazing and determined woman.

-Anna

Helen Harrison said...

To Anna,

One of the problems with pain control for preemies is that both the pain of NICU treatment, and, it appears, many common pain relievers, can cause brain damage to preemies.

It is hard to know how to negotiate these treacherous shoals, but at least most doctors now acknowledge that preemies *do* feel pain (perhaps even more than older individuals) and that they are permanently marked by it.

I wish you luck in your future medical career, and hope you will continue to consider neonatology.

I did not know about the sextuplets until I saw your post. At that almost impossible gestational age, my heart really goes out to them and their family.

And I am a big proponent of breastfeeding. It is the one major intervention that seems to improve the outcomes of preemies Though I realize the evidence is becoming somewhat mixed on this issue, I remain confident that one of the best family supportive measures any NICU professional can take is to encouraging lactation and breastfeeding and the wonderful physical, emotional and immunologic bonds that ensue.

Thank you for you kind words!

Best wishes,

Helen

Anonymous said...

Helen--

Again, thanks for the info. I should probably mention that I didn't read through the comments when going thru the blog and didn't know you posted here-- I was referencing you as a a well-known far-off famous person- ya know? (although I obviously knew next to nothing about your mission) You are definitley well-known in the neo community! Some say you are negative, some say you are realistic, and some are like me and say you speak for what you believe-- I can't judge, I have no idea what its like to walk in your shoes.

I too am heartbroken for the sextuplet family here--even sadder for them was that another set was born in AZ today at 30w4d. The 23 wkers will likely die or have serious health issues, while the 30wkers (from what I know) will probably have a non-invasive 6 week stay and suffer only minor delays and no long-term problems. I am sure both women did everything "Right"--one's body handled the pg and one's didn't. Its stories like these that make me TERRIFIED to do IF treatments, even though I have PCOS (never fully dxed--but I just know) and cannot likely conceive on my own.

As far as my possible neo-career goes, I currently work on a L&D floor in a suburban hospital--where any mom in labor @ less than 36 wks is sent to children's hosp. in Minneapolis. We have a few preemies once in awhile (almost always 32+wkers) who transfer over once they are "grower's and feeders"--never w/ a cannula/CPAP/brain damage, over having A&B's. And I am to "junior" to handle them. But we are talking about building a NICU down the line to allow Children's to focus on cancer--what they do best. Who knows?

Wow--this was long:)

-Anna

Anonymous said...

Terri--

Thank you for sharing your story w/ me-- I can't imagine the horror you felt at finding our your dd had been operated w/out meds (although, Helen informed me that it can cause brain damage, I'm honestly not that educated on the subject).

You are right, the media is into "The doctor said he would be blind/deaf/paralyzed but he is a genius" type stories-- I guess I just don't believe them b/c I don't trust the media anyway (another LOOOONG story).

I've never been involved too mch w/ the MOD--like I said, prematurity is an abstract subject to me, as I don't have children. I can't imagine how a preemie mom would feel if she saw an ad like that.

It certainly would be more realistic if the media told the whole story , but of course they want to make moola off the rare, exciting stories. I've often wondered why Discovery Health Channel featured update on the quints born @ 32wks but not the quints born @ 24 wks. Is it b/c the kids have disabilities? Of course, I don't know, and to be fair, they did feature a triplet update in which 2 of the families had a child on the autism spectrum. Autism, for some odd reason gets ALOT of media attention (although they usually do not mention prematurity), probably b/c most cases are unknown causes and there are debates over vaxes, TV, etc.

I can't imagine the suffering of families who have kids w/ disabilities--the financial and emotional stress would certainly tear marriages apart.

-Anna

Anonymous said...

Stacy--

Those blue eyes are so captivating...

Just a side note--If you want to, I would encourage you to add www.micropreemietwins.blogspot.com to your list. Holland and Eden were born at 24w3d and are almost 3. Both have CP--one very mild, one more severe, and one is deaf. Their mom is positive and inspiring but also frank and realistic about the effects of their early birth and their disabilities.

Just throwing that out there, of course.

-Anna

folliculitis said...

I've been through this since my wife and I had a premature baby and the fact the decision of a second child is not easy ... thanks for the aport is very rewarding

support for parents of preemie babies said...

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Anonymous said...

thanks for a great post!