Written by Morrison and Dwight’s mother, Heather Driscoll
After struggling with infertility for two years and spending thousands of dollars, we were finally pregnant. With twins. After all that pain and suffering, I smiled at the thought of being repaid with two babies! Our excitement was short lived.
At 20 weeks my cervix began shortening, and at 22 weeks I had an emergent cerclage placed. Two weeks later, I was in active labor and an ambulance rushed me to the nearest hospital with a level 3 NICU. The last thing I remember was a doctor leaning over me and saying, “I just want you to know that your babies have a very poor chance for survival.” The twins arrived on March 31, 2017. Nine hours later, I woke up and I couldn’t breathe because I was intubated. I heard doctors telling my husband, “she’s not out of the woods yet,” and my aunt telling me to keep fighting. I had no idea what had happened.
After being intubated and awake all night, I learned that I had an amniotic fluid embolism, needed chest compressions for six minutes, and 12 units of blood. All I cared about were my babies. Thankfully, they were stable. I ended up being in the hospital for five days. Once discharged, I visited my twins every day.
Morrison was defying all odds and doing so well. Dwight was another story. His lungs weren’t as strong, and he was struggling. He continued to struggle for weeks. On day 22, Morrison was up to full feeds and they began adding milk fortifier to my expressed milk. His PICC line was taken out the next day and we thought we were finally starting to see the light at the end of the tunnel. On April 23 my husband and I were both visiting and I held Morrison for a few hours. Everyone was all smiles. The nurses were taking pictures for us. We left at 3pm and by 6:30pm we got a call that changed everything. Morrison had suddenly developed severe NEC. I had never even heard of NEC and had no idea preemies were at risk.
His team planned to transfer him to another hospital for surgery. We drove to the other hospital, to meet him upon arrival. Our baby Morrison never arrived. A few hours later we got a call to come back to the original hospital to say goodbye. We made it back just in time for his dad to hold him for the first and last time. By midnight, Morrison was gone.
The next day we were told Dwight needed heart surgery and we were going to be transferred to another hospital in a few days. It was at this new hospital that we learned about a human milk based fortifier, Prolacta. We also learned that our original hospital didn’t offer Prolacta because it was “too expensive.” I will always feel that a human milk based fortifier would have greatly reduced our son’s chance of developing NEC.
As a mother who’s son died from NEC, I want other families of preemies to know the difference between bovine-based fortifiers and human-milk based fortifiers. I’d like to see all surgical NICUs discontinue the use of bovine-based fortifiers in preemies and other babies who are at increased risk of NEC. I will forever question whether both of my babies would be alive today had they been born in a different hospital with different feeding protocols and care practices. There’s a chance that a human milk based fortifier could have saved my baby’s life, but I couldn’t even advocate for myself or my babies because I wasn’t fully informed. Families deserve the right to know about all feeding options that are available to their medically fragile infant, even the ones that are only available at other hospitals. In honor of Morrison, I am speaking out and hoping to improve outcomes for other babies just like him.