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CONGENITAL DIAPHRAGMATIC HERNIA - AN UNPREDICTABLE CONDITION

From St. Louis Children's Hospital Doctor's Digest, written by Pam McGrath, posted May 14, 2012

Brad Warner, MD,  chief of pediatric surgery  calls congenital diaphragmatic hernia (CDH) an enigmatic disease because patients’ outcomes are so unpredictable.

“There are some factors that may suggest which babies will do better. For the most part, however, these patients either do well or do poorly, and currently we have no concrete way of predicting those outcomes,” he says.

Three years ago, newborn medicine specialist, Tasnim Najaf, MD,   formed a team of  neonatologists, pharmacists and surgeons at St Louis Children's Hospital to determine best practices related to the care of patients with CDH.   Based on this review, the treatment in the neonatal ICE adopted more aggressive therapy than had been used in the past.

“Our overall survival rate for these patients is 65 percent, which matches the national average,” says Dr. Najaf. “For patients with isolated hernia, our survival rate is about 77 percent.”

Among the patients to benefit from the hospital’s aggressive therapy guidelines is Lincoln Olds, born May 26, 2011, with a right side hernia. Only 12 percent of all babies with CDH have this type of hernia, compared with 80 to 90 percent of cases that develop the left-sided hernia.

“We received a confirmed diagnosis of Lincoln’s right-sided CDH at 23 weeks gestation,” says Lincoln’s mom, Dorothy Olds. Lincoln’s dad is Dan Olds, who works as a mechanic in St. Louis. “The doctors could tell that Lincoln’s heart was pushed over as far as it could be, but we had to wait until he was born to see how serious the CDH was and what other complications may exist.”

Once Lincoln was born, imaging scans and other testing confirmed a Morgagni hernia as well as  mild heart complications. No other major problem were identified. Although he remained relatively stable on a ventilator his first night, within 24 hours Lincoln developed pulmonary hypertension.

For the next five days the NICU team attempted to regulate his condition with oxygen and blood pressure medicines, but by June 1 his progress had slowed to the point of his SLCH physicians recommending he be placed on extracorporeal membrane oxygenation (ECMO).   Here is a photo of Patrick at one day



“We were told that survival without ECMO was around 10 percent, but with ECMO the survival rate was 55 to 60 percent,” says Dorothy. “It was an easy decision that was still difficult to make since the blood thinners he needed to be on with ECMO could possibly cause internal bleeding or stroke.”

His first nine days on ECMO, Lincoln remained stable but didn’t improve. Then, finally, he began breathing better and by day 12 was weaned off ECMO.

“Our nurse called him the ‘perfect ECMO patient,’ meaning he was on for about two weeks, and he was able to wean from it without any issues,” says Dorothy. “His medical team only had to add one medicine to help Linc’s heart work more efficiently in order to wean, compared to the nine medications he was on before ECMO support.”

Lincoln was well enough to undergo his hernia repair on Thursday, June 16, which was performed by pediatric surgeon Kathryn Bernabe, MD,  Linc’s entire small intestine, part of his large intestine and liver were herniated into his chest. Dr. Bernabe was able to reposition his organs and repair the hernia using Lincoln’s native diaphragm rather than a patch, which helps reduce infection and the chance of the hernia recurring.

Lincoln recovered well from his surgery and was able to go home after 83 days in the NICU. Now 9 months old, he continues to need oxygen and an inhaled medication for asthma, but he no longer takes any oral medication.

“We are turning down his oxygen and hope to have him off it soon. He hasn’t had any problems with oral aversion like some babies who begin life on an ET tube,” says Dorothy. “His first hearing test was normal, and he responds and carries on little conversations when we talk to him. He continues to have some physical and occupational therapy, but he’s pretty much on target for reaching and picking up toys.”

Despite the long days that bounded between worry to hope, Dorothy and Dan are grateful for the advanced care Lincoln received from the NICU and pediatric surgery teams at SLCH, as well as the ancillary services vital to Lincoln’s recovery.  Here is Patrick at nine months !



“When I was first at home taking care of Linc, it was always reassuring to know I could call the hospital with any concerns I had. I got to the point where I was totally comfortable telling the nurses and doctors everything, and I still have no reservations asking any questions I have,” says Dorothy. “Now it’s comforting to take him in and have everyone so happy to see him and how well he’s doing. It’s a great relationship for which Dan and I are grateful.”

Says Dr. Najaf, “The first time I met Dorothy and Dan was during their antenatal consultation. The relationship we have built since then has one focus: to work together and improve Lincoln’s health. This goal is possible by the collaborative effort between multiple services involved and the love that Dan and Dorothy have for their son.




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