Saturday, October 21, 2006

Really little babies

I just attended a reunion of NICU babies at our hospital. The NICU is the neonatal intensive care unit, where premature or other medically distressed babies go to get bigger and stronger. Over the last 15-20 years, there have been major advances in the treatment of these babies that allow even very small ones (1.5 pounds) to survive. Surfactants allow their lungs to be opened, and new types of ventilation permit them to breathe without damage to delicate repiratory tissues. Previously, many would die. Ordinarily, they stay in the NICU until their normally expected birthdate, which could be days, weeks, or months.

At this reunion, we revealed photographic portraits of 11 of these babies, who now range in age from 3 to 14. There are pictures of their baby days and from now, along with a written summary of their stay in the NICU and their current activities. They kids play lacrosse, compose music, excel at school, and engage in a multitude of normal activities. Some have neurological or other problems resulting from their premature days, but all are happy, functioning children.

The portrait gallery is called the "Hall of Hope" and is designed to give current NICU parents encouragement as they walk by to visit their really little babies. We are not the first place to do this, but I am pleased that we have done so.

If you had or knew a NICU baby (or were one!) and want to relate your story, please submit a comment.


Unknown said...

I have NICU twins that are now 14. They were born at the Brigham, so that's the NICU I'm familiar with. Our story has to do with twins, a high risk pregnancy due to congenital heart disease, and IUGR (intrauterine growth retardation). My children were born at 33.5 weeks, which makes them 6.5 weeks early for full term singletons, and about 3 weeks early for twins. I was induced because Baby B (my daughter) was in destress due to IUGR. She had stopped growing and was being monitored daily until they had to induce me or she would have died.

They were born after 10 hours of labor, and Baby A was an easy vaginal birth. Baby B was stuck in a transverse position and they could not get her as she was so high up in the uterus. Just as the OBs were calling for a C-Section, my OB grabbed her by a leg and delivered her as a footling breech. Her umbilicle cord was black and completely calcified. It fell off at delivery. My placenta was also calcified and was retained for the pathology department to look at. (Unfortunately, that meant that my uncle, the head of pathology at the time, got to see my placenta. Squee!)

Baby A was 6 lbs even and apgars of 8, 9.

Baby B was 4 lbs 5 oz with apgars of 4,7. She was rushed to NICU before I even got a chance to see her. Baby A was fine and stayed with me, nursing like a champ.

Baby A was in NICU for almost 4 weeks. She had trouble breathing, even with the surfactant, had a level 2 brain bleed and enlarged ventricles, and was having a hard time maintaining her body heat. She was on parental feed for a couple of weeks and then moved to expressed breastmilk in a preemie bottle. Her suck was so poor that 2 oz was the maximum she could tolerate. Nursing was a no-go as she had no ability to latch.

Her health problems were myriad. In the first year she was diagnosed as spastic quadraplegia (CP), microcephalic, had gastrointestinal issues and stomach emptying problems, and never slept. She had multiple ear infections and had ear tubes installed. She was in early intervention for 3 years.

Developmentally she has NVLD (non-verbal learning disabilities) and CAPD (central auditory processing disorder) But otherwise she is physically and emotionally strong. Her LDs have a significant effect on her schooling, but she maintains a B average in a competitive high school. Physically her CP resolved itself with early intervention and a lot of work with PT.

Our NICU experience was short and easy compared to the 29 weekers we grew to know. But having a child in NICU is a horribly scary situation for any parent to be in. I think it's great to have those reunions just to show new parents how kids can overcome a lot of birth obstacles and become strong, personable children as they grow older.

Anonymous said...

Thanks, Margalit, for sharing this remarkable story. I am glad that Baby B is doing so well.

To others, as you can see, the pain and joy of the NICU experience are uniquely intertwined.