Sunday, January 28, 2007

"Well, she looks good to me"

I find this to be one of the most dismissive statements one can say to a preemie parent. At a time when you should be happy that your baby/child "looks good", having a preemie doesn't afford you this joy.

Many people have said this to us over the years. It makes me want to scream. It completely negates everything we are dealing with at the time!

Yes, she looks good but do you realize that I just spent an hour trying to give her a bath. She has sensory issues and the water causes her pain.

Yes, she looks good but do you realize that she is an ounce away from a feeding tube.

Yes, she looks good but do you realize that she has pain every day.

Yes, she looks good but do you realize that her seizures have caused others around her to be afraid of her.

Yes, she looks good but do you realize that she has such horrible anger outbursts that we have to watch her so she does not hurt herself.

Yes, she looks good but do you realize that she doesn't have any friends because they all think she is weird.

Yes, she looks good but do you realize that the only reason she has gained weight is because we have worked so hard with her.

The Internet is not large enough for me to continue.

The most frustrating of all is when doctors have said it to us. As if "looking good" means that nothing can be wrong with you!!!

When our daughter was 4 years old she started having very bad pain in her legs. She was so fatigued that she could no longer walk around the block. During an appointment with her neurologist he asked her how she was doing, while she was hoping up on to the table. She told him, "my legs hurt." to which he replied (while patting her on the head), "no they don't." She told him again, "they really hurt." and he told her "they must not hurt that bad-you didn't have a problem hoping on to the table." He turned to me and I went on to explain that she really was in pain. Her legs were so tight that, when sitting with her legs straight, her toes touched the floor. It was hard to look at. He looked at her, looked at me and said, "she looks good to me." I stood up, picked up my daughter and said, "you are failing my daughter with you attitude!" and I walked out.

Another doctor told us that she looked too beautiful to have any of the problems we were describing (all OCD related).

Yet another one told us that we were lucky that she was born premature because she was so petite and pretty.

A geneticist once told us (while being evaluated for a mitochondrial disorder) that she was too smart and pretty to have mito. He finished up the appointment by saying, "she looks good to me."


Sunday, January 21, 2007

How is she doing?

Over the past 8 years I have been asked that question a countless number of times.

In the beginning my answer depended on who asked...

To the store clerk I would say.... "Oh she is doing great. A true miracle!"

To the relative I would say... "She is such a fighter. A true miracle."

To my friend, who has full term children... "She is so strong. She's going to be just fine."

To my husband, when he would call during the day... "She's just laying on the floor screaming. When I try to hug her she scratches her face. I'm exhausted."

It didn't take long for me to realize that she was not one of the "miracles" on television and I became sad. Why did I have a preemie who was not fine? What did I do (or not do) during her early years? Why are all of the other micropreemies OK, and mine is not? I was told that I was having trouble adjusting and my stress was affecting my daughter.

I thought I was alone. Then I found a very small group of other parents who did not have a miracle either. You mean... I am not alone? Your child cried all of the time too? Your child did not talk on time? Your child has severe constipation? Your child has severe sensory issues too? Your child has epilepsy? Reflux too? Sensory integrations dysfunction... that's what it's called?

As I woke up, I became angry. I was angry because I was forced to believe that all preemies are miracles and they turn out fine. After all, they do catch up by age 2, right? Ha!

I began to tell everyone the truth about our life. "How is she doing?" turned into an opportunity to educate the public about the effects of prematurity. I told the store clerk, relatives, friends, other parents in waiting rooms, nurses, doctors, specialists, receptionists in specialists office, parents at the preschool my daughter attended, teachers, neighbors. I was awake and shouting.

Do you want to know what happened? (those of you who are preemie parents may already know)

I was labeled. I became one of the following...

  • the parent who wanted the attention because she had a micropreemie
  • the parent who could not get over her daughters early birth
  • the parent who couldn't accept that their child was fine, despite being a preemie (our daughter really "looks" fine on the outside)

The best one yet....

  • the parent who has Munchhausen's (oh yes, it really happened!)

Some of those labels were given to me by preemie parents themselves! Those who were at the beginning of their journey were the hardest on me. I was trying to make it better for *them* (and all who would come after them) by educating everyone. (**let me stop here and say that I am NOT upset with the new preemie parents-I was one of them and treated others the same way)

OK, let me catch my breath.

I went back into hiding and into a deep sleep again.

A few years passed and I was contacted by a large organization who now raises awareness about prematurity. They wanted our daughter to be an ambassador (of our county). Ah ha! My outlet had arrived. Now, when people ask me 'how she is doing', I can tell our story. The whole truth, and people HAD to listen. I started doing interviews for newspapers. The paper would arrive and 1/2 my story was cut. The television interviews... mine never aired. The speeches.... after the first honest one, I was given a fraction of the time to speak. The ambassador that was chosen the following year was only 1 year old. Cute as a button and her parents told of their miracle. I am no longer involved with that organization.

I refuse to go back into hiding again. No more deep sleeping for me.

Yes, my daughter looks "fine" but she is not. Those of you who know her may still label me. I don't care anymore. I dare you to live in her body and mind for a week. You'd come out screaming too!

*I* owe it to the future preemies, and their parents, to be honest.

To the media... are you brave enough to report the truth?

(by the way... you know that small group of parents that I found who validated my experience... it's not so small anymore. And, there are hundreds of other groups where parents are expressing concern about their "miracles")

Wednesday, January 17, 2007

The Outcomes....

Helen Harrison has compiled a list of "preemie syndrome symptoms". She entered this in the comments section of one of my posts but I feel that this list is important and wanted to devote a post to this list of issues that preemies face.

Let me make something very clear. Helen is just reporting on what other preemie parents have listed as "issues". These issues ARE real. Over the years I have been in contact with hundreds (not just 15-some of you will understand this humor) of preemies who have these "issues".

Those of you who are new parents are were told of these potential issues... you are lucky and should be thanking those that have come before you and fought to be heard. When our daughter was very young, we had many pediatricians and specialists tell hubby and I that our daughter was the only one who was experiencing some issues. Then I started talking to other preemie parents. Imagine the joy/horror we felt to know we were not alone. We started speaking up, fighting to be heard, so other parents would not ever experience what we went through.

The list is not complete. If you have more issues you are wondering about.. please feel free to ask.

Helen Harrison said...

Here are the preemie syndrome symptoms I used in a 2005 presentation to the National Perinatal Association.These are the traits that don't show up in premature follow-up studies, but alone or in combination, and they usually exist in combination, these traits may prevent future independent living.

Social Dysfunction: few, or no friends; oblivious to social cues; oblivious to social space; low self-esteem

Behavioral Problems: general immaturities; poor impulse control; stereotypic or self-injurious behaviors; intense need for order and routine; sleep disorders

Extreme Sensitivities: strong startle reactions; hypersensitivity to sound; extreme aversions to certain tastes and textures; "tactile defensiveness"

Cognitive Problems: difficulty thinking logically or to dealing with abstraction; literal-mindedness; May be good at rote learning; test scores may be higher than actual functioning;

Also "savant" traits that co-exist with low IQ; inability to comprehend or follow simple directions; generally disorganized

Abnormal Reactions to Pain and Danger: may not respond to pain of illness or injury, but may also still have a deep fear of medical procedures; may fail to recognize (or actually seek out) life-threatening experiences; peculiar phobias

I only included behavioral/cognitive issues above. Many will recognize them as compatible with autism disorders. Elsewhere I have also mentioned the physical and medical problems that continue to afflict our children:

significant motor problems not diagnosed as cerebral palsy

intractable feeding disorders; failure to thrive

digestive problems, such as severe reflux, intractable constipation, bowel adhesions from NICU surgery,gall bladder disease, need for g-tube feeding arising in late infancy or beyond

kidney stones


osteopenia (rickets)

precocious puberty

ongoing lung problems; severe asthma

visual problems from ROP that deteriorate leading to later blindness

metabolic syndrome (high blood pressure, diabetes, high BMI)unusually copious sweating (metabolic? neurologic?)

cortical blindness


Depression; bipolar

Delusional thinking; schizophrenia

Perseveration Seizure disorders arising in adolescence or early adulthood

dental issues (yellow adult teeth, high pallate, missing teeth)

vocal cord paralysis

Friday, January 12, 2007

And then there were 2

"Are you going to have any more children?"

That question, no matter who asked it, would incite a rage inside of me, like nothing else I ever felt. How could we possibly bring another child into this world knowing that the chance of it being born premature was extremely high? The simple answer... we couldn't do it.

We sure did want more children. I love being a mother and hubby is a great father. As a little girl I always pictured myself as a mother of 2 children. Ok so I also pictured myself living in the middle of a huge field that had tall grass that would blow in the wind. I would sit and watch my children run through that tall grass and I would soak up the beauty of the sun and how it reflected off of their golden hair. Then I grew up and realized that life was not like the Little House on the Prairie.

As the years passed I dealt with all of the anger, sadness, depression, that came along with the decision to not have any more children. By the summer of 2005 I was pretty much healed. So, I sold all of the baby items that I thought I needed to keep. It was that last step in wrapping my head around the knowledge that we would only have one child.

At the end of that summer I started feeling sick. Missed periods, major cramping, constant urination, nausea, constant crying (all speaking engagement were now out of the question-no one could understand me through the uncontrollable sobbing). Just for ha-ha's I took a pregnancy test, 2 of them actually and they were both negative. Off to the doctor I went convinced that I had some sort of cancer or tumor.

"Congratulations you're pregnant" said this cheerful voice. "I'm WHAT?"

After nearly passing out of the floor, the next leg of my journey began, nearly 7 years after the birth of my daughter. After finding the right doctor and hospital (we moved to a new state just 10 months before getting this big news) I was determined to not allow my 2nd child to be a part of the preemie experiment. I chose a hospital that did *not* have a level 3 NICU. I knew that, if needed, my little one could be transported across the street. I chose a high risk doctor that understood our wishes-no resuscitation before 25 weeks. She also understood that I was not to have mag sulfate, under any circumstances. She also agreed to tie my tubes during my c-section. (other docs refused to do this because they felt I was too young... I'm in my late 30's!)

My daughter was a nervous wreck my entire pregnancy. One day, while rubbing my belly she said, "baby brother please stay in there as long as you can because it's so hard to be a preemie."

It was a very hard pregnancy with many complications (list too long to mention) but I made it to 35.4 weeks. As of now, his only preemie complication is severe reflux. He is 8 months old and the light of our lives. I am so very thankful that he was a surprise.

The baby factory is officially closed!

Monday, January 8, 2007

The definition of "experiment"...

According to the definition of experiment is as follows...

a test, trial, or tentative procedure; an act or operation for the purpose of discovering something unknown or of testing a principle, supposition, etc.: a chemical experiment; a teaching experiment; an experiment in living.
the conducting of such operations; experimentation: a product that is the result of long experiment.

So, why name my blog "the preemie experiment"?

Let me start at the beginning.

The day my water breaks, with my first pregnancy, I was 23.0 weeks pregnant. The experiment begins as soon as I am admitted. I was told that I would go into labor within 24 hours. When that didn't happen a neonatologist came into my room to tell my husband and I that our daughter will never be normal if she is born before 26 weeks and that she would most definitely have disabilities. He told us that we should just hold her and let her die in our arms. He was even willing to make sure our wishes would be carried out in the delivery room.

How could a doctor be so cruel? How could he stand in front of us and tell us to let our child die? One very simple explanation... he had seen other preemie experiments and the outcomes were not good.

I didn't appreciate his knowledge at the time.

When we refused to give up, I was moved to another hospital with a NICU that was able to care for micropreemies. Before being transferred I was shot up with steroids to help her lungs mature (another part to the experiment). At the new hospital I had daily tests and throughout the next 2 1/2 weeks I had more steroid injections. (ah... the experiment continues... In case you aren't aware... there is no proof that more than one course of steroids is more effective but being that I was now willing participant of the experiment-they can do what they want)

The experiment received their next participant the day our daughter was born-at 25.5 weeks, weighing in at 1 pound 12 ounces and 13 inches long. Post natal steroids for her-not being sure on the dosage-they just guess (based on past participants). So many tests for her lead to many blood transfusions. X-rays, ultrasounds, exams... all part of the experiment. Central lines, TPN, IV's-all without any pain meds. Is this humane? Alarms blare, phones ring, people talk loudly around the babies. All part of the experiment.

78 days later-daughter is discharged and we are told, "she's a fighter, she'll be fine." The experiment continues for the first year. We attend follow up meetings to check her progress. A success in their eyes which means more willing participants for their experiments.

That was 8 years ago. She walks, she talks, she is advanced in some areas of school. She is beautiful. Hardly an outward sign of her prematurity.

A success?

Not if you ask her. She is in physical pain daily thanks to mild cerebral palsy. Headaches. Seizures. Major sensory issues. Can't write long due to fatigue and pain in her hands. Severe OCD. Pain in her eyes from the scar tissue. Has thoughts of killing her parents and her brother, and even herself. Tics. Chronic constipation. Yellow adult teeth. Reflux that has put holes in her teeth. Years of physical therapy. More tests. Lots of blood tests. Etc... blah, blah, blah.

Our heart aches for our daughter. I don't know what life would be like without her. I just can't bear to think what life will be like *for* her.

There are new participants every day. Even younger ones. 22 and 23 weekers are entering the experiment even as we continue with ours.