Arce, Juan Pablo

I had a rough pregnancy with both of my kids, but with Juan Pablo I was in bed rest since week five. I had several blood episodes, placenta abruption, placenta previa, preterm contractions, preeclamsia and finally preterm labor at week 36.

Juan Pablo was born by a c-sec and he was fine the first couple of days, but at day 3 he started developing apneas and cyanosis. He was moved to NICU and the doctors performed several tests on him. Finally at day 15 he was released from the hospital with a reflux type 3 diagnosis. He was being checked by another pediatrician back then. but after the pneumonia we started seeing a new ped., Dr. Capuano.

He had several colds and cough in his first three months of life, but when he was three and a half months he was admitted to the hospital with pneumonia. We stayed there for 10 days and he was released but his right lung still showed a "blur".

After three weeks of the pneumonia the "blur" still showed in his chest x rays, so the doctor performed more tests and he found that his diaphragm wasn't the way it was supposed to be. The doctor told me that this could be an eventration or a hernia, but he didn't perform a CT scan on him due to the risk of sedation. Finally after months of seeing him, Juan Pablo was finally diagnosed with a Right Sided Eventration and Paralysis of the Diaphragm, a very rare type of CDH.

I've read a lot about CDH and Juan Pablo's case is not like all the cases I've read. Juan Pablo wasn't diagnosed when he was born, he was diagnosed months after and that's rare. Most of the cases I've read about end up in surgery, Juan Pablo's doctor won't perform surgery now, but he wants us to meet the surgeon every 3 months with new chest x rays to keep a close eye on him.

Juan Pablo’s reflux gets worse with his CDH, so there is no day where he doesn’t vomit. Some days are less times and some days are more. It’s very frustrating for me because I spend my day trying to feed him, cleaning vomit, changing his clothes, mine and then trying to feed him again.

In March of 2008 Juan Pablo was very dehydrated and we were admitted to the hospital right away. The nightmare was at the ER because they couldn't find a vein to get the IV in so they had to place a small catheter in a neck vein through a vein-dissection (small surgery). It was really a hell for Juan Pablo, cause they had to pinch him several times without success... We stayed at the hospital for 5 days and finally he was released drinking liquids enough to go home.

Juan Pablo ate fine by his first year of life, he only ate Gerber stuff, 2nd stage. But lately it has really become a challenge for me to feed my child. During summer all he drank was formula and that’s it. Now I am trying to slowly introduce new foods to him, but he’s not the great eater he used to be. He’s developed oral aversions on and off.

After months of being here at home and barely go out, we ended up counseling and we’re trying to live a “normal” life. Our journey hasn’t ended, but we’re trying to make the best out of it.

My prayers are with all the angels and survivors of CDH.

Written in 2008 by Juan Pablo’s mom, Fernanda Arce Amaré (Mexico)