Beth was 20 weeks pregnant when she went in for what she thought would be a routine ultrasound.
"I went in thinking we'd find out if we were having a boy or girl and then move on with the rest of the pregnancy,” Beth said. "Instead, I left the appointment feeling anxious and worried.”
Indeed, Beth learned she was pregnant with a girl, but there was more news she did not anticipate. A spot on the baby's bowel was found, which ultimately was identified as an intestinal blockage – something that can be very serious.
Fortunately, duodenal atresia – the type of blockage found on the scan – is usually treatable with surgery immediately after birth. Still, this unexpected news, combined with a separate finding of a hole in the baby's heart, left a large cloud over the rest of the pregnancy for Beth and her husband, who live in central Wisconsin.
On one hand, getting this information a few months before their baby was due gave mom and dad plenty of time to plan for the emotionally rocky road that lay ahead. On the other, there were lots of unanswered questions that would have to wait for answers until birth. Moreover, knowing that their baby would be taken to surgery so soon after entering the world left them anxious at a time when most expectant couples get to revel in the excitement of a new baby.
The intestinal blockage left open the possibility for other complications that might not be known until birth. Knowing that she had to have bowel surgery right away added to the stress.
Birth and surgery scheduled in Madison
Plans were made for Beth to deliver in Madison rather than at home because of the need to be close to American Family Children's Hospital, where the surgery would be done. In cases like this, the mother delivers at UnityPoint Health – Meriter, home of the UW Health Maternal Fetal Medicine team as well as a Level III neonatal intensive care unit for newborns needing acute care.
As Beth's pregnancy continued, so did the complications. By week 30, Beth's baby was diagnosed with an abnormal arrangement of heart veins. Ultimately, this condition would be diagnosed as heterotaxy – a rare birth defect signified by an abnormal arrangement of internal organs in the chest and abdomen. Fortunately, this abnormality did not affect the baby's biological function or cognitive development.
After several weeks of nervous anticipation, Beth delivered her beautiful baby girl – named Ivy – on a late night in August 2016.
"I got to hold Ivy right away, but I knew it would only be a day or two before she would have surgery. I did everything I could to avoid an epidural so I would be physically capable of riding along with her in the Med Flight ambulance to American Family Children's Hospital.”
About 36 hours after birth, Ivy was taken to the operating room, where UW Health pediatric surgeon Peter Nichol, MD – considered a national expert on duodenal atresia – repaired Ivy's intestinal blockage.
Surgeon was confident and assuring
"Dr. Nichol was very confident, which I appreciated because all of my hopes and fears were tied up in what he was about to do to my baby,” Beth said.
A few hours later, Dr. Nichol walked into Ivy's hospital room in the neonatal intensive care unit (NICU). Everything went just fine, he assured Beth, much to her incredible relief.
"He was very nonchalant, as if it's all in a day's work,” Beth said. "Even though it was hardly routine for me, I felt much better knowing it all seemed routine for him.”
Recovery from duodenal atresia surgery typically includes a two-week stay in the hospital.
"Getting babies to feed safely and start gaining weight can be tricky after bowel surgery,” said UW Health lactation consultant Barb Fibich. "In Ivy's case, she started with intravenous feeding, followed by tube feeding into the small intestine. Once she began to gain weight, our team, which includes experts in lactation and speech pathology, helped Beth begin breast feeding.”
Spleen abnormality also discovered
As if Ivy didn't have enough challenges, one more anomaly was discovered around her 10th day of life. Instead of a single normal-sized spleen, which most of us have to filter our blood to help fight infection, Ivy was found to have a chain of mini-spleens in her belly – a condition called polysplenia.
"Without a single normal spleen, Ivy's ability to fight infection was compromised, although we have no way of knowing by how much,” said Dr. Joe McBride, a UW Health infectious disease specialist. "Accordingly, we put Ivy on penicillin to boost her immunity. In time, we will revisit this course of treatment but for now, we consider this a very low-risk approach for treating her polysplenia.”
Aside from occasional check-ups with Dr. McBride and the Pediatric Infectious Disease Clinic, Ivy has done great over the four years since recovering from surgery. Her family is incredibly grateful for the care they received at American Family Children's Hospital. At the same time, they deserve plenty of credit for being so highly engaged with her daughter's situation and Ivy's medical team in Madison.
"Ivy's family was very hungry for information to be sure they would do right by their baby,” said Dr. McBride. "I was confident Ivy would do well in their hands.”
Now 4, Ivy was scheduled to start 4K in fall 2020, but her parents deferred school for a year because of COVID-19, something that Ivy refers to as "the sickness.”
Ivy's interests run the gamut from LEGOs to art projects to reading to cats and pigs. She enjoys cooking and baking with her mom and also loves looking at pictures and hearing stories of her time in the hospital – so much so that she wants to be a surgeon when she grows up.
"When she turned 4, she asked for the Smithsonian human body encyclopedia,” said Beth. "She loves X-rays, bones and learning about all the body systems. And when she pretends to 'operate' on her stuffed animals at home, she often assumes the role of Dr. Nichol.”
When asked what stands out about her daughter's care at American Family Children's Hospital, Beth can't say enough.
"They took care of my baby, but they also took the time to take care of me too,” Beth said. "I remember so many people during our time in the hospital who will always hold a dear place in my heart.”