It’s something expectant parents relish — ultrasounds that show their little ones in the womb.
“Our baby boy was kicking, rolling around and showing mommy and daddy how he can stretch out his arms and legs,” Hoboken, New Jersey, mom Casey Kirsch wrote in a letter to family describing her 12-week sonogram. “We left with tears of joy in our eyes and our hearts brimming with happiness.”
But a call later that night brought word that Kirsch’s ultrasound technician had noticed something besides her baby’s many movements. The next day, a specialist confirmed the technician’s suspicions: Kirsch’s baby had an omphalocele.
A birth defect that affects some 775 US newborns each year, an omphalocele occurs when an infant is born with organs outside his body in a thin sac attached to his belly button. Kirsch was devastated, but ultimately channeled her emotions into optimism, hoping that the omphalocele was small enough to mean a relatively short hospital stay for her little boy, whom she and her husband had decided to name Jackson.
“I will deliver at a special hospital via c-section and he will have surgery immediately to hopefully correct a small omphalocele. He will be in the hospital for the first month and then hopefully ready to come home,” Kirsch wrote.
Things didn’t go exactly as Kirsch had hoped. See her family’s incredible story in pictures below.
Overcoming Omphalocele 1 of 15
How a determined medical staff and loving parents gave a little boy with a big birth defect a chance at a normal life.
Many Tests 2 of 15
After doctors confirmed Jackson's omphalocele, Kirsch had a battery of tests to rule out other birth defects commonly associated with omphalocele, including heart defects and chromosomal defects. On that front, Kirsch and her husband Bryan were relieved to receive good news: the feared defects had not been detected. But there was a new reason to worry. The omphalocele, doctors determined, wasn't small at all -- in fact, it was considered "giant," containing Jackson's intestines, liver and some of his stomach. "Our hopes of it being small and us going home only after a couple of weeks time (after a much less complicated procedure to "put" the sac back in his abdominal cavity) was gone," Kirsch wrote in a letter to friends.
Early Labor 3 of 15
After the omphalocele diagnosis, Kirsch was referred to the Center for Fetal Diagnosis Treatment, a leading fetal treatment center and part of the Children's Hospital of Philadelphia. Kirsch went into labor at 36 weeks and was delivered by c- section at the center's Garbose Family Special Delivery Unit. "I was amazed at the power of my body, the safety I was able to provide for Jackson while carrying him in my womb. But once he was born, he needed machines of all kinds to survive, and the loving care of an entire team of people -- nurses, doctors, social workers —- watching out for both us," Kirsch said in an article on CHOP's website. The hospital, she said "Became another 'womb' for him."
‘Paint and Wait’ 4 of 15
The size of Jackson's omphalocele made him ineligible for immediate treatment, Kirsch said. Instead, the sac covering the omphalocele was "painted" with an antibiotic cream to protect it while skin gradually grew over it. The treatment is known as "paint and wait."
The New Family 5 of 15
The first-ever photo of Jackson with his mommy and daddy was taken when he was 10 days old. "Certainly not the conventional first family photo, but I had accepted by this point that most, if any, of our firsts would be of â€˜normal' standards," Kirsch told me.
Making New Friends 6 of 15
The Kirschs grew close to CHOP's staff, including his surgeon, Dr. Holly Hedrick and his nurse practitioner, Taryn Edwards, pictured here with Jackson. "I'm forever indebted to the both of them, along with all the other amazing people at CHOP," Casey Kirsch said.
Bandages by the Bundle 7 of 15
Jackson wore an elastic bandage over his sac that had to be changed daily. "Bryan and I never missed a changing and were incredibly hands-on, which attributed to us going home earlier than anticipated," Kirsch said. "Before discharge, Bryan and I had to â€˜prove' ourselves and show that we could both get sterile (and) keep all the tools/materials for the dressing change sterile in the process as well as know how to drop his nasogastric (NG) tube so that he could eat." Jackson was discharged after two months.
Beer Belly Baby 8 of 15
Jackson's treatment worked as expected, with gravity slowly pulling his organs back into his body. The Kirschs kept a sense of humor about the situation, frequently joking that their boy had a beer belly. The photo above was taken on St. Patrick's Day.
Solid Fun 9 of 15
"Jackson was not given the OK to start on solid foods until he was about five months old," Kirsch said. "In fact, for the first five weeks of his life, he received my breast milk, which was fortified with formula for the extra calories... via a nasogastric tube." Due to his omphalocele, Kirsch explained, Jackson needed the extra calories to power the rapid breathing of his small lungs.
A Frightening Return to the Hospital 10 of 15
Jackson had been born with bilateral inguinal hernias in addition to the omphalocele. The Kirschs were instructed to monitor the hernias and, if they grew hard to the touch or caused him discomfort, to head straight back to the hospital. When Jackson was just over six months old, Casey Kirsch noticed that the hernias seemed larger than normal. When she touched it, the baby screamed. "I woke my husband up, told him to pack a bag and get the car ready," Kirsch said. "We were driving to CHOP."
Emergency Surgery 11 of 15
At the hospital, Jackson had emergency surgery after doctors determined that a problem with one of the hernias had caused blood flow to be cut off from the baby's vital organs. "CHOP had said if we waited anywhere between 12-24 hours more, we would have lost him," Kirsch said. After a tough week -- during which Jackson also caught an infection -- the baby was discharged. "That week was the first time reality set and I for the first time, truly dealt with the mortality of my son."
‘Square One’ 12 of 15
Though the hernia surgery was successful, the progress that had been made returning Jackson's organs back to his body was reversed. "After the hernia repair, we were back to square one pretty much all the contents that had gone in were pushed back out. Thankfully, we were able to get it back to a â€˜small' place and on track quickly," Kirsch said.
DO Go in the Water 13 of 15
By the time Jackson was eight months old, skin had closed over his sac and he started taking swim lessons. " We are big beach people and a concern of ours was that Jackson wouldn't be able to go in the water whether pool or ocean, but we were wrong," Kirsch said.
One More Surgery 14 of 15
The day before his first birthday, Dr. Holly Hendrick performed the surgical closure of Jackson's omphalocele, which entailed putting" what's remaining back inside an then stretch the muscles, sew them up and then give their best attempt at a belly button!" Casey Kirsch explained. Above, Jackson is pictured about a month after the surgery.
Jackson Today 15 of 15
Jackson still gets check-ups at CHOP, but he's a very happy and healthy little boy. Now 2-and-a-half years old, he "is extremely intelligent, with a huge sense of humor (and is) inquisitive and eager to experience the world," his father, Bryan Kirsch said. Jackson's likes include painting, singing his ABCs, watching the television show "Team Umizoomi" and admiring public service vehicles like fire trucks, ambulances, trains and school buses. "Jackson has a huge heart, an innocent spirit and is tremendously kind to everyone who crosses his path. He brings and elevated level of enthusiasm and love to not only Casey and me, but our extended families."
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Photos courtesy Casey Kirsch.