Before my daughter was born, I participated in the March of Dimes’ March for Babies for several years. In my mind, it was a fun walk to do with my dog and coworkers and I thought it was cool that it benefited premature babies. Then I developed severe preeclampsia/borderline HELLP and my daughter Kennedy had to be delivered at 27/6 weeks and she, along with my husband and I, were thrown into the world of the NICU and premature babies. It was then that the March of Dimes and the March for Babies took on a very real meaning for us. This year my daughter is the ambassador for the Charleston March for Babies! Check out this great video about Kennedy’s story.
I went to my 24-week prenatal appointment expecting a quick visit. But, life had other plans. I felt 100% normal, but my blood pressure was high and I ended up spending the night in the hospital. I also started visiting an amazing high-risk doctor twice per week, and my regular ob-gyn once per week. I was put on multiple blood pressure medications, but my numbers didn’t budge. I felt fine the entire time.
At 27 weeks, my blood pressure got very high and I was admitted to the hospital. I was moved between labor and delivery and antepartum, depending on my blood work. The medical team thought they could stabilize me to buy more time, but unfortunately my blood pressure and blood work didn’t cooperate. Kennedy was born via emergency c-section.
Kennedy spent 12 weeks and 1 day in the hospital, and many of those days were scary. Things started out as well as you might hope for a baby that age. As soon as my precious 2 pound, 2 ounce girl was born, she cried, she pooped, and she initially only needed C-Pap oxygen. She still needed to be in a radiant warmer, and the first time I saw her, she was in a plastic bag (and because I had a c-section and was on a Magnesium drip, that was the only time I saw her for the first day and a half).
When babies are born that early, their skin is still pretty transparent, they are red, their eyes are solid black, their movements are incredibly disjointed, they’re unable to breathe independently, they can’t regulate their own body heat, and they have no ability to eat by mouth. As you might imagine, all of those obstacles alone require a vast amount of medical intervention.
The first few days of Kennedy’s life
The first few days were “good,” if it’s possible to recognize a good day when your baby is hospitalized. I left the hospital without my baby, and that was the worst thing ever. I seriously couldn’t believe that I was going home and my daughter was in the NICU. I cried and cried that day. As mentioned, I had a c-section, so I couldn’t drive for the first week, which meant I had to wait for my husband to get home from work so we could go to the hospital to see her. I called the hospital to check on her a million times.
When Kennedy was around three days old, she developed unilateral PIE (pulmonary interstitial emphysema). That’s when things got even more real. She was on a high frequency ventilator for a month, got three x-rays a day, blood work many times per day, and she also had high bilirubin scores, so she was on the “blue light.” She had 266 tests and multiple blood transfusions while she was hospitalized.
Because of both her very early birth and her need for a ventilator, we were unable to hold her for nearly four weeks. It was awful to go to the hospital multiple times per day and see this tiny human in an enclosed isolette, on a ventilator, with IVs and monitors surrounding every inch of her tiny body.
Doctors tried everything imaginable to treat the PIE, but Kennedy’s lungs didn’t respond quickly (and sometimes didn’t respond at all). It was tricky because the treatment required to help the lung with PIE directly harmed her “good” lung. But, the NICU team worked miracles and Kennedy recovered. Her lung condition was terrible. It’s quite a miracle that she survived. One of her nurses told us that when she had the PIE, she was the sickest baby in the NICU. I’m thankful that we didn’t know that at the time!
After the PIE resolved, she was on c-pap and nasal cannula for another four weeks, and then spent another four weeks in the hospital working on other skills required to go home. She went home on her due date with an at-home monitor and a few medications, but didn’t require oxygen.
So thankful for the March of Dimes
Thanks to the unending commitment of the doctors in the NICU and innovations funded by the March of Dimes, Kennedy fully recovered and continues to thrive. Kennedy and I survived due to excellent medical care and the March of Dimes. If it weren’t for the medical team or the programs and innovations funded by the March of Dimes, neither of us would be here. Very scary, but very true.
The March of Dimes advocates for all mothers to seek prenatal care and stresses the importance of folic acid. Thank goodness prenatal care was a top priority for me. As I said, I felt completely fine… meanwhile a deadly complication of pregnancy was brewing inside of me.
In Kennedy’s situation, she received three doses of surfactant therapy, a synthetic of the surfactant humans naturally produce that allows the lungs to stay expanded. Without the surfactant therapy, Kennedy wouldn’t have survived. Only 25% of preemies develop PIE, and for babies who receive surfactant, that percentage is significantly lower. In Kennedy’s case, having the surfactant helped give her “good” lung a fighting chance, and perhaps saved her from having PIE in both lungs.
For babies like Kennedy, the mission of the March of Dimes is literally life saving. Even if you don’t have a premature baby, or don’t know anyone with a premature baby, the March of Dimes has touched your life. Whether you received a polio vaccine, had a child get a heel-prick test at birth, or know a mom who took folic acid during her pregnancy, you’ve been positively impacted by the work of the March of Dimes.
I invite you to walk with us at Cannon Park on April 29th to help support the amazing work of the March of Dimes and help give all babies a healthy start to life. To create a team for the Charleston walk, visit marchforbabies.org. To join my team, check out my page.