Wednesday, February 22, 2012

Just one of the bummers of being a preemie parent...

Our little peanut discovering, over the years as they do new research, that treatment and care my fragile, tiny baby received was not the best for him, and in fact might have harmed him.

This is beyond the usual, run-of-the-mill stuff all parents face about risks their babies faced:
No, in addition to all of that and the plentiful risks we already knew about as preemie parents (like babies who are born extremely prematurely have nearly double the chance of developing ADHD), we have to worry about:
  • BPA: Not only did we use BPA baby bottles for pumped breast milk, but we also froze the bottles and warmed them up in hot water, potentially allowing the dioxin to leach into the milk...because Chris was not able to nurse, we went through TONS of these bottles (provided by the NICU).
  • Steroids: Immediately after Chris was born, Mike was asked if he wanted him to participate in a study to determine whether steroids given after birth improve outcomes. Clueless, he asked the neonatologist for advice, and after he recommended it, Mike agreed to it. What did we know, any of us, at the time? A few years later they discovered that steroids given after birth can result in a decreased size of the cerebellum, and in fact, Chris does have an abnormal cerebellum. Who knows if it was the steroids? On the other hand, the steroids might have helped his incredibly immature, fragile lungs to develop, since I didn't have time to receive any steroids before he was born suddenly. 
  • Drug reactions and allergies: Chris almost DIED because of a near-fatal reaction to a drug called Captopril, which is used to lower blood pressure and is now known to result in nephrotoxicity in some premature babies. This drug caused an extreme dive in his blood pressure, resulting in damage to one of his kidneys and worse, cerebral edema and low flow to the brain. After we spent one day terrified that he had fatal brain damage before he miraculously turned the corner, he was lucky to survive with a damaged kidney.
  • Excruciating-to-watch (and I imagine
    traumatic-for-the-baby) eye exam early preemies
    have to endure every week to watch for ROP
  • Oxygen: Chris went home hooked up to an apnea monitor, large oxygen tank, and a laptop computer (not to mention multiple medications). We called him our high-tech baby. The laptop was for another study called Stop-ROP, which was trying to assess whether keeping oxygen levels higher for babies at risk for retinopathy of prematurity (ROP), a serious preemie eye disease that can cause blindness, would decrease the chance of ROP acceleration. The study involved 649 infants at 30 centers over 5 years. Half of the babies, including Chris, received high supplemental oxygen (96 to 99% saturation) while the other half received conventional levels of oxygen (89 to 94%). What that meant was that we had to keep his oxygen saturation between 96 to 99% at all times--and this was tracked on a laptop. They found that supplemental oxygen did not reduce the progression of the disease, but it didn't make it worse. (Chris did have ROP, which is why he has had to wear glasses since he was 3; however, it stopped progressing before he needed to have surgery. ROP is why Stevie Wonder, a preemie, is blind.) However, the supplemental oxygen INCREASED the risk of pneumonia, worsened chronic lung disease, and the need for oxygen, diuretics, and hospitalization. After this discovery, they stopped the study.
  • Chris was on the drug Propulsid to treat his reflux...and a few years later, it was pulled from the shelves because several people (including premature babies) died after taking it.
And now 15 years later, they are saying that premature babies delivered by C-sections are 30 percent more likely to have trouble breathing. As you'll know if you've read the story of Christopher's birth, he was born via c-section, perhaps because of the prolapsed cord. My OB told me that if he were born vaginally, he would die, and if he were born by c-section, he'd have a 50% chance of survival. It's hard to say how she came up with those statistics. Now they know that C-section babies don't have fewer common complications of premature birth, such as brain bleeds or seizures. And they have a higher risk of respiratory distress syndrome, which tiny little Chris had in spades.

Our high-tech baby on the day he (finally)
left the NICU after 117 days
And therein lies one of the major stressors of being an NICU parent. You desperately want your baby to live and thrive, yet you have no clue what you are doing. All you can do is follow the medical advice you are given, and the NICU is a literal testing ground for new medicines and research, much of it helpful and life-saving, and some of it ultimately damaging. It's hard enough not to feel guilt as a preemie mom...these new developments do nothing to relieve the guilt.

As a preemie parent, you never stop wondering..."what would my child have been like if he (or she) had not been born prematurely?" I know we are one of the extremely lucky families, and I am certainly grateful to medical technology and the doctors, nurses, and other staff who saved Christopher's life and kept us afloat. But I wish the damn choices were easier and didn't have such potentially damaging effects.