Owen's Story

"Our story isn’t typical but it is a NICU story nonetheless, and a hope to raise awareness and provide comfort to parents of children affected by Hirschsprung’s Disease.

I had a healthy pregnancy and elective c-section on 10/31/22, at 39 weeks 5 days pregnant. We chose Halloween as my OBGYN was out of the office the week before, and I wouldn’t want anyone else to deliver my babies. We took my other two children to my parents house and went to the hospital halloween morning, excited to find out the gender of our third baby- a tie breaker of our girl and boy at home.

Everything went as expected during the c-section. My husband announced the gender- a boy, and the nurses let me do skin to skin while my OBGYN put me back together. Owen Nicholas was born at 10:41am weighing 7lbs 14oz and 20.5 inches long. He was perfect and latched in the operating room. He nursed throughout recovery as well. After having trouble nursing my first, I was relieved as it seemed he wouldn’t have trouble nursing.

That night, it seemed as though he didn’t have much interest in nursing. I would have to undress him to wake him up but he would still fall asleep at the breast. I would set my alarm so I would wake up every 2 hours in an attempt to nurse, but he still wasn’t that interested. The next morning, the lactation specialist stopped by and discussed to express and spoon feed what he didn’t take in while nursing. The doctors were also concerned that he hadn’t had a bowel movement yet. As the day went on, he continued to be sleepy and uninterested in nursing. I tried to use a nipple shield, as I did with my first baby, but it didn’t help. I started to spoon feed him expressed milk for the couple minutes he was awake every 2 hours. Nothing worked.

At 10pm on November 1st, the nursery doctors wanted Owen to get an X-ray to see if there was a reason why he hadn’t had a bowel movement yet. The nurse wheeled him out in his bassinet close to 11pm. The nursery doctor and another male doctor wheeled him back in about 15 minutes later. I had a feeling in my gut that something was wrong. The nursery doctor began to tell me it looked like Owen had a blockage in his bowels. They felt it was necessary to take Owen to the Nicu and have the pediatric surgical team evaluate him. The NICU doctor explained that there may be a chance he would have to be transported to UH rainbows and babies. As they wheeled him away I called my husband who was at home with our other two children. My mom ended up going to the house so that my husband could come to the hospital.

The NICU doctor returned and explained they were having a hard time putting an IV in Owen and that they would need to put an IV in his belly button. I wouldn’t be allowed to see him as they were still getting him situated in the NICU. When my husband arrived about 45 minutes later, we had to wait another half hour or so to see Owen. When we finally saw Owen, he had an IV in his left hand; an IV in his bellybutton; stickers on his chest and belly to monitor his heart and a tube coming out of his mouth.

We were told by the NICU doctor that the surgical team felt it was necessary to send Owen to rainbow and babies and transport was on the way. A nurse practitioner in the NICU suggested that she would call the nursery and have the OB discharge me so I could go with Owen in the ambulance. I will forever be grateful for this nurse practitioner. The transport team was able to wait for me to be officially discharged before we headed to UH rainbow babies.

We arrived to UH rainbow babies around 3 AM but had to wait in a family room for the new NICU nurses to get him settled. The morning was uneventful until the surgical team came in to evaluate Owen. It was then that they discussed he would have a test called a barium enema to evaluate the blockage that was seen on the x-ray. The NICU medical team did the rounds in the room and discussed possible diagnoses. This was the day we learned the term Hirschsprung’s disease and got a little definition from the Nicu medical team.

Hirschsprung’s disease affects one in 5000 and is suspected when a newborn does not pass meconium in the first 24 to 48 hours of life. It is a birth defect that occurs due to a lack of nerve cells in the large intestines. Nerve cells control having bowel movements, and the lack of nerve cells in the intestine cause a back up of stool and can lead to blockages. It is diagnosed ultimately with a biopsy but a barium enema may show suspicion of it.

I was able to go to the barium enema with Owen which was done the afternoon we arrived on November 2. Owen was not able to nurse or have anything by mouth due to the potential blockage and lack of bowel movements. The next day, Thursday November 3, the surgical team took a biopsy in hopes for a diagnosis. Since he still wasn’t having bowel movements, they also did an irrigation to help evacuate stool. They continued with the tube in his mouth so that his stomach would decompress from the gas that was built up.

On Friday, November 4, the surgical team did another irrigation but did not get any output. Owen began having bowel movements after this irrigation but they were hesitant to start feeding him. Since they weren’t going to start feeds, I went home for the first time to see my other children while my husband stayed with Owen. On Saturday, he had his tube taken out of his mouth and we started nursing . He was doing so well that we were discharged on Sunday afternoon.

Although this ended our Nicu stay, it did not stop our issues. We would be home for four days before ending up in the hospital again. Owen was ultimately diagnosed with Hirschsprung’s disease after a biopsy under anesthesia performed on December 6. He underwent surgery on December 13th at six weeks old. We have his first follow-up appointment with the surgical team tomorrow at 10 weeks old.

I never expected this to happen nor would I wish it on any child or parent. Having a seemingly normal pregnancy and delivery to an urgent transfer to a different hospital at 2 AM. From denial that anything could be wrong with my newborn, to constant worry and anxiety that continues to this day. Every nurse, nurse practitioner, doctor, social worker, child life specialist that we came into contact with were amazing. These healthcare professionals deserve the world for the care they provide.

To the NICU mom/dad/parent(s), The best thing someone told me while this was happening was “it’s OK to not be OK.” It’s ok to cry and grieve for the normalcy that you wanted. Owen was hospitalized for almost the first two weeks of his life. I didn’t have the postpartum experience I thought I would have- being home with my other two children learning how to be a mom of 3. Instead, I was learning how to be a mom of a newborn that has medical issues, as well as, a mom of 3."- NICU Mom, Megan