By JESSICA CRAWFORD
• Leader & Times
Congenital Diaphragmatic Hernia is not something people in Liberal hear about very often. In part, this is because the in utero condition that can dramatically threaten the life of an unborn child is something so rare, a hospital the size of Southwest Medical Center is simply not equipped to handle it.
Jaime Ponce and Monica Astorga are expecting a child with CDH. Currently, they are in Dallas, Texas, awaiting the birth of their child and constantly praying for the safety of their baby, which they recently found out is a boy.
Ponce’s sister, Susana Ponce, explained the condition her new nephew will face when he is born.
“The doctors took some pictures and his heart is kind of to the side and his lung is collapsed,” she said. “Instead of being in the belly where they belong, the intestines are up with the heart. So there is no room for his lung.”
Jaime and Monica only recently discovered the enormity of the situation they were facing, Ponce said.
“She is about six months along and due in August,” she said. “When we went to Amarillo just last week is when we found out about this. She didn’t even know why she was going to a genetic specialist. When we were driving down there, we stopped to get gas and I looked at the referral. All I remember from the paper was the word ‘hernia.’ She didn’t know anything was wrong, she said she was just sent down there to do an ultrasound and tell her the sex of the baby. She had no idea that anything was wrong.”
Staying in Liberal, Ponce said, wasn’t an option for Jaime and Monica. A larger city with more capabilities was a must for the wellbeing of their son.
“When in Amarillo, they were told their choices were to go to San Fransisco, Dallas or Oklahoma City,” she said. “When the baby is born, he can’t be here because the doctors can’t work with that here.
“She was told she needed to carry the baby as long as possible,” she explained. “She just saw the doctor in Dallas and he told her it is better to get her induced. It will probably be soon. When we went to Amarillo last week, the baby was only one pound and one ounce. So, they will be doing a couple more tests this upcoming week and the week after that, and that will determine when they will induce.”
Ponce said Jaime and Monica have had many hurdles to face with the sudden and unorganized move to Dallas. She said their vehicle, which is more dependable than the pickup Jaime did have, still has no air conditioning. Doctor’s appointments, she said, require a substantial amount of travel for Jaime and Monica.
The couple, Ponce said, have been together for approximately two years. Although they are frightened, they are trying to stay as positive as possible.
“It is my brother’s first baby, she has three little girls – so this is her first son,” she said. “My brother is very upset. He is terrified, and she is as well.”
There are several avenues as to which anyone wishing to help this young couple can reach out to them in their time of need. Susana and Jaime’s mother, Martina Ponce, has opened a special account for the couple at Bank of America, labeled the “Friendship Account.” Martina can be reached at 626-9414. Susana can be reached at 417-3201.
Anyone wishing to personally reach out to the couple in Dallas can send cards and letters to: Jaime Ponce and Monica Astorga, 1511 E. Walls, Sherman, TX 75090.
Congenital Diaphragmatic Hernia (CDH) occurs in approximately one in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs’ ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth.
Every patient diagnosed with CDH is different. Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available. There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery.
Roughly 50 percent of babies born with CDH do not survive. Of the 50 percent that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues.
CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.
Every baby with CDH is different – like a snowflake, no two are alike. What works for one baby, may not work for another. There is no reliable indicator to predict if a baby will do well or not. Babies with no diaphragm and little lung sometimes do well, while babies with two full lungs can sometimes do poorly. Head to lung ratio is used to determine whether to intervene prenatally through in utero treatments but it does not indicate a true survival rate. “Lung function” is also not an indicator as there are many other factors at work with these children such as kidney function, brain function, other birth defects, possible complications or infections while in the hospital, etc.
CHERUBS - The Association of Congenital
Diaphragmatic Hernia Research, Awareness and Support Website