Haley and Andrew say the story of their daughter’s birth is filled with silver linings. Charlotte was diagnosed with an omphalocele at their 16-week ultrasound, and it shook their world.
“We had never even heard that word,” says Andrew.
A fetal omphalocele is a rare abdominal wall defect in which a baby’s intestines, and sometimes other organs, are on the outside of the abdomen. The condition has a wide range of outcomes from relatively minor abnormalities to complex, potentially life-threatening issues. That uncertainty created stress for Haley and Andrew.
At multiple points in their journey, Haley and Andrew braced for the worst outcomes. Fortunately the experts in Children’s Hospital Colorado’s Colorado Fetal Care Center helped them avoid the most serious complications.
Receiving an omphalocele diagnosis
When Charlotte first received an omphalocele diagnosis, her parents didn’t know it’s severity. After one of the longest months of their lives, they got some good news. Maternal fetal medicine specialists at the Colorado Fetal Care Center diagnosed Charlotte with an isolated omphalocele, meaning a small part of her intestine was growing outside her abdomen but it wasn’t affecting other organs.
A fetal omphalocele is also often associated with chromosomal abnormalities, so Haley did genetic testing at Children’s Colorado to rule out other issues and those tests all came back showing no further complications. A small silver lining shone on them.
The first meeting at the Colorado Fetal Care Center
Haley and Andrew were referred to the Colorado Fetal Care Center and their first meeting was with 15 maternal fetal specialists. Initially, they were a little overwhelmed, feeling that the large team signaled how serious Charlotte’s condition was. Again, a silver lining emerged.
“With all those specialists, you know you’re in good hands,” says Haley. “Everyone was incredible, answering every question we had and helping us think of the questions we didn’t have.”
Chris Derderian, MD, who would be Charlotte’s surgeon once she was born, told Haley and Andrew he wasn’t losing sleep over Charlotte’s condition and that they shouldn’t either.
“To hear that from her surgeon after a month of uncertainty was very comforting,” says Haley.
Meeting Charlotte and getting omphalocele treatment
Haley started going to Children’s Colorado for weekly ultrasounds to monitor Charlotte’s progress, which was very positive. At 37 weeks, she had grown quite a bit and was sprouting an impressive head of hair. Haley hoped they could wait a little longer before birth.
Henry Galan, MD, a maternal fetal medicine specialist, took her hand and said, “Charlotte looks really good right now and we want to keep it that way.”
He asked her to return the next day to deliver Charlotte.
Haley gave birth to Charlotte via caesarean section and she was quickly whisked away for evaluation. Andrew went with Charlotte to check her vitals and get oxygen, which she only needed for 20 minutes. The fetal care team wrapped her omphalocele to keep it sterile and then she went to the Children’s Colorado Neonatal Intensive Care Unit (NICU) to recover and wait for surgery. Haley and Andrew got to hold her before surgery, which they had worried wouldn’t be possible if she was in critical condition.
Even though Charlotte was doing well, surgery at two days old is stressful for parents. Haley and Andrew got dinner to occupy their time when Charlotte went into surgery. They were still eating when Dr. Derderian came out an hour earlier than he planned and told them surgery went better than expected.
When Haley and Andrew went back to see her in the NICU, Charlotte looked like she never had an omphalocele.
A short omphalocele recovery in the NICU
Ever since Charlotte was diagnosed, her parents prepared for complications and a long stay in the NICU. They were able to take time off work and planned on staying for two weeks to a month. Charlotte was able to go home after 7 days. Because Charlotte was doing so well, Haley and Andrew spent less time worrying about her medical care and more time learning how to be parents – with the help of expert neonatal nurses.
They did everything on their own that they could but had the expertise of trained nurses to help them learn the best way to bathe, swaddle and feed their baby. Another silver lining.
“That gave us those special early times as a family,” says Haley. “You’ll never get that time back so I’m glad we had it as a family.”
Now Charlotte is home, where Haley and Andrew say she already knows she’s in charge. She’s very sweet, loves to snuggle and is unleashing the full array of grunts, squeaks, snorts and other baby noises.
Haley and Andrew are enjoying their time as a new family and keeping another silver lining in mind. Charlotte’s original due date was September 4, which was Haley’s mom’s birthday. Haley lost her mom a couple years before Charlotte was born and hoped the two would share a birthday, just like they share a middle name, but Charlotte came early.
“We love that she’s blazing her own trail,” says Haley.
Read more about Omphalocele:
Giant Omphalocele: Patient born with organs outside of her abdomen receives transformative care
