“I knew that my baby would be taken from me as soon as she delivered, but nothing prepares you for that,” said Brandy. “I didn’t even get to see her when she was born and I didn’t know if she was going to live or die. Dayton Children’s transport was there on scene waiting for her arrival and I got to touch her little hand for just a minute before they took her to their neonatal intensive care unit (NICU). I had to stay behind at Miami Valley recovering from the delivery while my baby girl was fighting for her life just a few miles away.”
Brandy’s daughter Nora, was born with a life-threatening condition known as Gastroschisis that must be treated as soon as the baby is born. It is a birth defect of the abdominal wall. The baby’s intestines stick outside of the baby’s body, through a hole beside the belly button. The hole can be small or large and sometimes other organs, such as the stomach and liver, can also stick outside of the baby’s body. It can be jolting to see the baby in that condition.
“She looked so bad that for the first week of her life, I would only let my parents see her because the sight of her organs being outside of her body was graphic and just overwhelming,” Brandy shared, still emotional when recalling that time in Nora’s life. “My dad just couldn’t look at her suffering like that and it was the only time I’ve seen him breakdown.”
“During the first five days of her life, I could only touch her hand and I wanted so much to comfort and hold her…it was breaking my heart…what if we lost her before I even got a chance to hold her?” Brandi continued. “After the surgery to close her wound, I got to hold her for the first time for just a few minutes and it was such a special moment. You never get forget that.”
Gastroschisis occurs early during pregnancy when the muscles that make up the baby’s abdominal wall do not form correctly. Because the intestines are not covered in a protective sac and are exposed to the amniotic fluid, the bowel can become irritated, causing it to shorten, twist, or swell. Surgery is needed to place the abdominal organs inside the baby’s body and repair the defect.
For high-risk pregnancies and expected complications at birth for the child, Dayton Children’s has a nurse navigator who works with both Miami Valley and Dayton Children’s as part of the Fetal to Newborn Care Center to be sure that the mother and baby are both well taken care of and that the parents are always kept up to speed. They receive prenatal counseling and get to visit both facilities to get a sense of what will happen on the day of birth.
Miami Valley and Dayton Children’s created this care alliance, the Southwest Ohio Neonatal Collaborative, to align services and expertise to improve outcomes through clinical best practices and ultimately make the Dayton region the best and safest place to be born and provide the region’s highest level of care for high-risk moms and critically-ill premature babies. Both hospitals continue to operate their respective neonatal intensive care units (NICU).
Hospital officials from both organizations agreed that by joining forces and drawing on the experts from both hospitals who provide complex neonatal subspecialty care, the collaborative efforts elevate the quality of care for neonates and those neonates requiring ongoing complex pediatric sub-specialty care and improves the health care delivery system for both mothers and babies.
Nora was diagnosed early in Brandy’s pregnancy when an ultrasound at 20 weeks showed loops of bowel freely floating outside the baby’s belly. “It was such a shock at first, but my doctors immediately sent me to Miami Valley Hospital for expert advice and ongoing prenatal care,” said Brandy. “From that point on, Miami Valley and Dayton Children’s worked together to be sure that we would have the best outcome for Nora.”
It wasn’t an easy journey. As expected, when Nora was born, her intestines, stomach and ovaries were outside of her body. The doctor put everything into a sterile bag, and she was immediately transported to Dayton Children’s to have surgery.
“Dr. Jeffrey Pence was Nora’s surgeon and he was amazing,” said Brandy. ‘He called me at 2:00 in the morning right after my delivery and said he would take a look and see what he thought would happen. Then he called me again a couple of hours later to explain the process and his plan. He took his time every time he was with us to address my concerns. He even asked me if I wanted to watch since I was in nursing school.”
A pediatric surgeon with Dayton Children’s since 2008, Dr. Pence has had a lot of experience with Gastroschisis babies. In fact, he said that at any given time at Dayton Children’s, there is probably one Gastroschisis baby in the NICU. The condition is more common than most people think and although there are two types of Gastroschisis…simple and complex… most of the babies he has cared for at the hospital suffer from the simple version, like Nora, which has a high recovery rate.
After a successful surgery to put Nora’s organs back in place, Dr. Pence inserted a ”Silo” which is a plastic pouch that is placed into the incision and is used to return most of the baby’s intestines and other organs into the belly a little at a time. Otherwise, the baby wouldn’t be able to tolerate all of that pressure at once. To Brandy, it was a technique she compares to trying to squeeze toothpaste back into the tube.
“It was a painstakingly slow process and I was glad we had such wonderful support and care from the doctors and nurses. However, the nurse in me was amazed at the procedure and even with all of that detailed surgical work, Nora has absolutely no scarring…I’m sure that will be important to her someday!”
“For the first few months of her life, I was always afraid she wasn’t getting the nutrition she needed and that she was going to die,” Brandy said. “Even though I began pumping breast milk for her as soon as she was born, it was another 6 weeks before she could take it. I remember thinking that we would never be able to leave the NICU, much less make it home. However, once I was able to feed her, my spirits lifted.”
Nora spent almost the first full two months of life at Dayton Children’s recovering from her surgery and learning to eat. During the first several weeks, she only had IV nutrition. Once they began to slowly start bottle and breastfeeding her, she wanted to eat all of the time, but her tiny body couldn’t process event that small amount of food. It was a tedious process with limiting her bottle feeds and helping her body get used to it.
Even after Brandy was able to take Nora home, there were a few instances where they had to return to Dayton Children’s to help her body get back on track with processing food and fighting infections.
“With this birth defect, sometimes it takes a while to determine the right level of eating and how the body processes it,” said Dr. Pence. “It is not uncommon for babies to make several visits back to the hospital in the first year or two to get them regulated and on a healthy eating and mobility plan.”
Nora just celebrated her second birthday as an active and thriving toddler. According to her mom, she talks non-stop and she is obsessed with Nemo and Monsters Inc. She can eat just about anything she wants, but she loves fruit. That is helpful with keeping her digestive system active and moving. She sees GI on a regular basis because she can still have some digestive issues from time-to-time, but for the most part, she will be able to lead an active, normal life.
“I never thought I would get to this point in Nora’s life when she was just a normal kid who will never remember everything that had to happen to keep her alive when she was born,” said Brandy.
“I didn’t hesitate to choose Dayton Children’s to help us through this journey. Both my sister-in-law and cousin work there and I had a successful surgery there when I was a kid. Even though there were times I thought we would never make it home, I knew it was the right place to get Nora off to the best start possible!”