Posted at: 09/25/2012 6:12 PM
By: Ellery McCardle
Medical Edge: Hypoplastic Left Heart Syndrome
(ABC 6 NEWS) -- Pregnancy is an exciting time, but also a crucial time for a baby's development. For one couple, they were faced with a scary situation months before their baby was due.
At their 18 week check up, an ultrasound revealed one of their babies had a severe congenital heart defect, and there was little chance she could survive without surgery.
"The doctor came in and said 'there's a problem with your daughter's heart.' And you hear those words and you think, does that mean?" Said Christina DeShaw, mother of Ava Weitl.
Weitl and her twin brother Aidan were still in their mother's womb when doctors made the diagnosis.
Christina and her husband Brad learned that without open-heart surgery immediately after birth, Ava's chances of making it were slim.
"Ava has one of the particular kinds of congenital heart disease called hypoplastic left heart syndrome where the left side of the heart does not develop, as it should," said Dr. Benjamin Eidem, a pediatric cardiologist at Mayo Clinic.
He and surgeon Dr. Harold Burkhart led the team that cared for Ava.
Her right pumping chamber, that has to supply blood to her lungs and to the rest of her body, has to do the work of two pumping chambers.
On Ava's arrival date, it began with a scheduled C-section.
"At 8:20 she was born, they basically pulled her out, held her up so I could see her for a couple seconds, and then they had to whisk her away," said DeShaw.
"It's like, there's my little girl. You don't know what's going to happen from there out," said Brad Weitl.
Babies like Ava need three surgeries. During the first, Dr. Burkhart and his team reconstructed the aortic arch so blood can flow to her brain and out to her body. He also placed a shunt to allow blood flow to her lungs.
The second surgery will happen when Ava is between 4 and 6 months old. Dr. Burkhart will create a conduit to allow blood flow from the top of her body to the lungs. When Ava is about two, the third surgery will help the blue blood from her body flow to her lungs for oxygenation.
Seeing her baby hooked up to a mass of tubes was hard on Christina.
"Emotionally I just couldn't hardly breathe," said DeShaw.
But little Ava survived.
"Ava means life, that's how we decided to name her Ava," said Weitl.
Ava's doctors say the type of congenital heart defect she had is pretty rare. Some babies get heart transplants instead. When Ava's older she may need other surgeries, but her doctors expect that little girl will live a full and wonderful life.