|Our little peanut|
This is beyond the usual, run-of-the-mill stuff all parents face about risks their babies faced:
- BPA in baby bottles
- Phthalates in teething and other toys
- Lead in Thomas the Tank Engine toys (and other toys)
- Hot dogs and bacon being a risk factor for childhood cancer
- 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.
- 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.
|Excruciating-to-watch (and I imagine|
traumatic-for-the-baby) eye exam early preemies
have to endure every week to watch for ROP
|Our high-tech baby on the day he (finally)|
left the NICU after 117 days
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.