NEC Society
Written by Sarah Landry, Zachary’s mother
After a few miscarriages and the birth of our oldest son, Jackson, we were thrilled to find out we were pregnant with our second baby boy. My previous pregnancies were not easy and I delivered Jackson early due to preeclampsia. This time, I had hyperemesis the whole pregnancy, shingles, and preeclampsia. One morning I woke up sick and thought that it was just the hyperemesis, but as the morning went on I got worse and decided to go to the hospital.
On the way to the hospital, the contractions started and were very strong. Zachary was born at 36 weeks via C-section. He was 6lbs. 9oz. I noticed he had a very weak cry, which concerned me. The nurse eventually brought Zachary over to me and asked if I wanted to give him a kiss before they took him to the NICU. He was being admitted for respiratory distress. Later that same evening, I was told that Zachary started doing better but after they gave him a bath he began to have trouble breathing again and they were keeping him overnight.
The next morning a doctor from the NICU told me that Zachary was very sick. He explained to me that he was diagnosed with NEC. Of course, my mind was racing and I was trying to take in all the information but all I was thinking about was going to see Zachary. The nurse in the NICU had explained to us that she was feeding him and noticed that he had thrown up after his second feeding. They had switched him to a lactose free formula and he continued to vomit. She notified the doctor right away. I remember seeing the x-ray that showed pneumatosis in his descending colon and distended bowel loops and realized how serious this was. They started medication and stopped his feedings immediately. They inserted a PICC line. After seven days of waiting, feeling helpless, and praying, I noticed they were placing hot packs on his arm and I asked what that was for. They said that his PICC line was stuck but not to worry that this sometimes happens and warming up the arm will help it. I specifically remember asking what happens if it does not come out. I was assured that they always come out. Zachary was the exception.
Two days later the PICC line was still stuck and an ultrasound showed the PICC line inserted into his heart due to an 8cm blood clot extending from the insertion site to his subclavian cephalic vein junction. We were told that he needed to be med flighted to another hospital. After preparing ourselves and Jackson for this transfer, we were told that a specialist from that hospital was coming to examine Zachary. They decided the best treatment would be to keep him where he was and start ATP followed by Lovenox.
In the meantime, we were very slowly starting to introduce formula and the very small amount of breastmilk that I was able to produce. He was starting to tolerate the feedings. They made sure not to increase the feedings too quickly or by too much. He was also put under the bilirubin lights for moderate jaundice at this time. After 18 very long days in the NICU, most of his challenges, including his NEC had resolved enough to let us go home. He was tolerating all of his feedings with no signs or symptoms of the NEC.
His last x-ray of his abdomen looked amazingly great. They were able to remove the PICC line after 14 days. We continued the Lovenox injections for three months and kept him on Iron along with many outpatient specialist visits for the following two years. Zachary is now a playful, caring, adventurous, healthy, four-year-old boy who loves to wrestle and play with his big brother.
His only health issues that remain are a functional heart murmur and asthma. I look at him and thank God for how lucky I am to have two healthy beautiful boys. He truly loves and finds joy in even the simplest of things. I truly believe that if things would not have happened exactly the way they did he would not be here with us today, from his dramatic entrance into this world, to the NICU nurse knowing what was happening and acting so quickly, to the amazing doctors, nurses, and staff that fought for him the whole way. My heart goes out to all the wonderful families who lost their beautiful little ones to NEC. I am telling Zachary’s story in hopes of raising awareness and supporting the NEC Society’s efforts to improve care for fragile babies like mine.
Awwww thank GOD he’s doing amazing. He’s a handsome little warrior/miracle as we all are warriors & miracles! Truly inspired by his story & how amazingly his care team cared for you’ll.