'Miracle' baby fights severe congenital disorder

By Robynn Garfield | Posted - Aug 24th, 2013 @ 5:34pm

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SALT LAKE CITY — Jessica and Josh Swainston were excited to find out they were pregnant with their third child. At their first prenatal appointment, however, the doctors told them the baby was not doing well and Jessica would most likely miscarry. By 12 weeks, though, the doctors were surprised to see the baby had grown.

At 21 weeks, the Swainston's baby was diagnosed with a congenital diaphragmatic hernia, a condition where the diaphragm is malformed to the point that abdominal organs push themselves up into the lungs.

CDH affects 1 in 2,500 pregnancies. Over the last few years, doctors have developed better ways to treat the disorder and the morbidity rates have been dropping.

The Swainston's baby, whom they named Max, was born on July 10 at the University of Utah Hospital. His condition at birth was more severe than expected and the parents were told to prepare themselves for the worst.

He was given less than a 50 percent chance of surviving. In addition to the hernia, one lung was the size of a nickel and his good lung had a leak in it. He also had an infection somewhere in his body and his heart was weak.

"They were taking him to over to Primary Children's Hospital right after he was born," Jessica said. "They wheeled my hospital bed over to the NICU window and told us to say our goodbyes. The doctors didn't expect him to live very long."

Jessica said at almost every turn in her infant's young life, he has defied expectations.

"At one point he went into cardiac arrest for 15 minutes," Jessica said, "We just watched the doctors work and thought this might be it. But Max pulled through and is still with us."

Now at 7 weeks old, "Miracle" Max, as his family calls him, is improving. Doctors have taken him off some of his medications and are monitoring his lung functions.

What is CDH?
  • CDH (congenital diaphragmatic hernia) is a hole in the diaphragm. Babies born with CDH must undergo a repair of the diaphragm, usually directly following birth. <\li>
  • The mortality rate for CDH is around 50 percent.
  • 1 in 2,500 babies are born with CDH.

Josh Hensley is the local representative for a national group called Cherubs, a CDH awareness organization, and he and his wife have lost two daughters to CDH. He said his main goal is to educate people about what the disorder is and how common it can be.

"CDH occurs 1 in every 2,500 births in the United States," Hensley said. "That rate is about the same for babies born with spina bifida. We're trying to raise awareness of CDH and help get more support for people who get the diagnosis."

Hensley said the average medical cost for CDH in the United States per year is $250 million. For whatever reason, he said, most people have never heard of the disorder.

"We hear of people who, when they find out their baby has CDH, have no idea there are so many other parents who have children with the same thing," Hensley said. "What we really want to tell people going through this is ‘You're not alone.' "

As for Miracle Max, his parents said they are taking things one day at a time. On Aug. 23, Jessica was able to hold her baby for the first time, when he was almost 7 weeks old. She said it was an amazing experience.

"I got to hold Max for the first time after waiting 44 days," Swainston said. "I never realized how much I took for granted holding my first two boys right away. We still have a really long road with Max but we are so grateful for the miracles we have seen."

For more information about children born with CDH visit the Cherubs website . To follow Miracle Max, his parents have established a blog updating his progress.


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