November is Prematurity Awareness Month and this year Bloggers Unite is partnering with the March of Dimes in support of the Fight for Preemies. The goal of the campaign is to have 500 bloggers post about a baby they love on or before Prematurity Awareness Day (November 17) to create awareness of the ongoing need for prematurity research funding. Today, in support of the campaign and in my role as a March of Dimes mom, I’m sharing the story of my niece Alyssa, with heartfelt gratitude to her parents for their candor and willingness to have me write this post.
My brother George and his wife Estelle were the first in our family to get pregnant. It was not an easy course (multiple rounds of in vitro fertilization were required) but there was so much joy when we all learned that they were expecting twins. But then there was heartache. Estelle’s pregnancy progressed well up to week 20; healthy heartbeats were detected at her 20 week ultrasound. However, at the 21 week ultrasound, only one heartbeat was present: Twin B (Alyssa). The heartbeat for Twin A (Phoebe) could not be detected and at that stage, there was nothing to do but continue to carry both babies to delivery.
At 29 weeks, Estelle’s water broke in Phoebe's sac and labor started. Estelle was admitted to the hospital and the medical team attempted to hold off Alyssa’s delivery. At 30 weeks Phoebe was delivered stillborn vaginally and Alyssa was delivered via C-section. Alyssa weighed 3 lbs, 8 oz and was 15 inches in length. She remained in the NICU for 5 weeks. While in the NICU, Alyssa was on CPAP, had apnea and jaundice, required a blood transfusion, and caught a staph infection. She was discharged healthy but later required Early Intervention to cope with delays in physical and receptive language skills. The cause of Phoebe’s death was unknown.
I don’t think I’ll ever forget my visit to see Alyssa at the NICU. At the time, I really hadn’t been around many babies, much less tiny and frail ones. I was both eager to see her and also scared and uncertain. I didn’t want to do anything that could possibly hurt or infect her so as I crouched next to her isolette, overwhelmed by both the site of her and the stress and sadness George and Estelle both carried, I did the only thing a music and brain scientist could think to do: I sang. Softly, melodically, and with tears in my eyes.
That brief yet powerful moment in time will never leave me. It shaped my work when I was in academia (I helped launch a research program to evaluate the effects of music to help soothe stress responses of premature babies during medical procedures) and it has shaped my commitment to causes via Boston Mamas (such as raising funds for the March for Babies and becoming a March of Dimes mom). I felt such gratitude – and perhaps a little guilt too – when I sailed to term (actually, beyond term: 42 weeks) with Laurel. I cried during my delivery because I had been planning on and hoping for a natural delivery and instead underwent an emergency C-section. But I kept reminding myself that I was enormously lucky. My girl was coming out and she was fine. Estelle had to face delivering a premature and a stillborn baby. My heart aches just thinking about her experience.
Alyssa is now 6 years old. She is thriving (actually, maybe more than thriving; I can barely keep up with her…) and rarely gets sick. She’s developmentally totally on track (she actually skipped a grade) and runs, jumps, plays, and pirouettes with the best of them. And with the love and dedication of her parents, I don’t think she will ever forget Phoebe, or the fact that a lot of people have worked very hard to ensure her health, development, and happiness.
Estelle related to me that at the time of Alyssa’s birth, the March of Dimes did not have a large presence at their NICU. Since then, the MoD has developed a large presence through the work of a program called CNAC (Chapter-NICU Action Committee) in conjunction with their NICU Family Support program. Many changes have been implemented to make the NICU more family centered; bereavement support also now is offered. And while all of this change no doubt leads to some longing and bittersweet emotions, instead of lingering on wishing for things that could have been when Alyssa was in the NICU, Estelle has become active with this MoD program to help it continue to grow and thrive. And George is the driving force behind raising funds for their annual March for Babies walk.
I have so much love and admiration for George, Estelle, and Alyssa (and for little Phoebe, who I wish we all could have seen grow up alongside Alyssa). I am honored to tell their story here and I hope you will consider sharing it, and/or your own, in support of the Fight for Preemies.