Special Delivery: from Spina Bifida to Living Miracle

The Great Candy run benefits the Fetal Health Foundation, which helps families like the Carlins.  We’re honored to share the story of their miracle baby, Clara.

 

When Coon Rapids, Minnesota residents Nicole Carlin and
 her husband, Robert, were expecting their second child in 2015, they decided to have a nuchal translucency (NT) scan detecting any genetic problems. This procedure, which uses an abdominal ultrasound, measures the nuchal fold thickness, an area of tissue at the back of an unborn baby’s neck. Measuring this thickness helps assess the risk of Down syndrome and other genetic abnormalities in the baby.

“I only did this scan to get
a free ultrasound; we never thought it would pull anything up,” Carlin admits.

“We did the first (trimester) part and everything looked great. When we had blood drawn 
for the second trimester part, we got a phone call from the doctor. I missed the call, but knew something had to be up since she just emailed us with the first part.”

After playing phone tag with the doctor, the Carlins eventually learned that the second trimester results showed there was a 1-in-33 chance their baby had a neural tube defect. NTDs are a group of conditions in which an opening in the spinal cord or brain remains from some point early in human development.

“Our idea was that on the day before Christmas we’d get a fun 3D ultrasound and find out the sex of the baby,” Carlin said.

“Never did I consider that this ultrasound would be more than just a gender reveal.”

The planned ultrasound disclosed the great news that their baby was a girl, but it also showed that their unborn daughter was the 1-in-33. She had spina bifida, an open pocket in her back that results when the bones of the spine (vertebrae) don’t form properly around part of the baby’s spinal cord.

“One thing I can be really thankful for is that when the doctor shared this scary news with us, at the same time he reassured us that the situation wasn’t as bad as we might think,” Carlin acknowledged.

“He told us there is surgery they can do before birth and that we were great candidates for it. Also, they can do surgery after birth. Either way our baby would be okay.”

After hearing the spina bifida diagnosis, the Carlins agreed that they wanted to do anything and everything to help their child.

“I have always been a person who needs all the facts in order to make a decision,” Carlin says, “so I asked the social worker who came in with the doctor if there was someone we could talk to. We met with Dr. (Joseph) Lillegard, who was starting to perform fetal surgeries here at Children’s Minnesota in Minneapolis.”

After Dr. Lillegard answered their questions about fetal surgery, the Carlins told him they wanted to go ahead with the procedure, adding that even though they would have a great team of people helping them, they couldn’t leave their two-year-old son, Connor, for more than six to eight weeks. The physician assured them he would work with the medical personnel at the Fetal Center at Children’s Memorial Hermann Hospital in Texas to make sure the parents could get back to Minnesota as soon as possible following the surgery.

“Little did we know that we had touched him and that he wanted to keep our family together,” Carlin says.

“That weekend, after we talked, Dr. Lillegard flew down to Texas, met with the team, and asked if they could come to Minneapolis to oversee the first fetal surgery here. When he called on Monday, he told us that if we felt comfortable, he would like us to be their first fetal surgery patient at the Midwest Fetal Care Center, a collaboration between Children’s Minnesota and Allina Health.”

Following a week full of meetings during which they learned their daughter’s spina bifida was at L4-S5 and that the baby they named Clara also had a Chiari II malformation, a birth defect that can cause problems with balance and coordination, the Carlins decided to go ahead with the surgery.

“I told myself as we were going through all the meetings: ‘If this works out, it’s God’s plan and I will go in with no regrets,‘” Carlin says.

“Everything lined up so nicely. My mother-in-law said she would watch our son, family and friends stepped up and funded us the money we needed for me to take the necessary time off from work, and my employers said they would give me an extended leave of absence.”

“…he reassured us that the situation wasn’t as bad as we might think. He told us there is surgery an

At 25 weeks pregnant, the expectant mother was ready to take the next step in trying to save her daughter’s life. Carlin remembers that on the day of surgery, the doctor said he had never seen someone so calm and relaxed.

“About four weeks after the surgery, Clara unfolded one of her legs and I felt her kicking me,” Carlin recalls.

“When Clara was born April 25, 2016, her Chiari malformation had almost returned to normal and her back was fully closed with only a small scab. I believe this was due to God and all the great people praying for Clara.”

“Doing amazing” is how Carlin describes her daughter nearly a year later.

“She’s always happy, even if she doesn’t smile at first when she meets you. She will once she gets to know you.”

A test in late January showed Clara has a healthy bladder and does not require catheterization. Most spina bifida babies have
to be catheterized, so this was
a big benefit and result of successful fetal surgery. And she doesn’t need a shunt,
which many infants who don’t have fetal surgery get in
their first month to help their hydrocephalus, the buildup of fluid on the brain.

“She does great sitting up with no help needed and pulls herself up on her knees to play,” her mother reports.

“Since she has little feeling below the calf, we’re working on building (muscle) tone to get her to stand up fully.”

As her first birthday approaches, Clara enjoys playing with her big brother, prefers toys that light up and play music, and loves to talk.

“I really believe this was God’s plan for us,” Carlin says. “Fetal surgery was one of the hardest things I have ever done, but it was worth every second.”

photo credits: Lynsey Jaden Photography.

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