Arabella’s Story - Congenital Diaphragmatic Hernia (CDH)

A little over two years ago, my wife Mindy and I were expecting our third child. We were SUPER EXCITED to find out if we would be blessed with a daughter. (We have two amazing boys). So, we arrived at our appointment, where we would hopefully learn the sex of our child. Mindy went into the appointment first, of course, and I waited in the waiting room with our two boys until they called us in.

Time seemed to be crawling by... she was still in there. It had been about thirty minutes, and they hadn't called us back yet. That was odd, I thought to myself. So, we finally get called back, and the technician doesn't say a single word, except for, "it's a girl." We were overwhelmed with joy, asking for pictures, wanting to look closer at her, hear the heartbeat, etc. But the technician seemed distracted. He was stone-faced and told us we would be getting a call from them later that day. We didn't know what was going on.

We received the call later that day with the news...our little girl has CDH.

What is that? What is CDH? How, why did this happen? And so, the research began.

We learned all we could about this disease. We went to multiple consultations at Kaiser. We traveled to different specialists to get their opinion about what to do next. Everyone kept telling us the same thing. SHE HAS A 10 PERCENT CHANCE OF SURVIVAL. YOU SHOULD TERMINATE THE PREGNANCY.

Kaiser told us we have two weeks to decide when to have the abortion because California law doesn't allow it past a specific time period. So, we made an appointment to give up on our beautiful girl.

We were completely devastated at this point. There was no hope. There was nothing else we can do.

A few days later, we happened to stumble upon a support group on social media called "Tiny Hero."

I asked a random question to one of the fathers in the group, Joshua Patterson. This man guided us, showed us the pathway to saving our daughter's life. His family and mine are close friends now and always will be. I can't stress enough how amazing and how loving and caring the CDH community is. We are truly family.

Joshua told me about his daughter and how amazing she is doing with CDH. He told me about Dr. David Kays at Johns Hopkins Hospital in St. Petersburg, Florida. A revolutionary doctor who was doing things differently than anyone else. I needed to give them a call, Joshua says.

So, Mindy and I decided to call them. After all, we have nothing to lose, except for our daughter. We shared our files with Dr. Kays to try to give him everything we could about Bella.

He told us that she was very sick. If she was in my care, he said she has an 85 percent chance at survival. Wait…What? 85 PERCENT?! WHAT?!

Mindy and I decided to do what every parent's responsibility is to give your child a chance.

Mindy moved across the country to Florida. Away from her family and friends. For six months. She couldn't see her children, except through FaceTime, for six months. I arrived in Florida a few days before she was to be induced. This was it.

Arabella was born with two percent of her diaphragm. Her liver, stomach, kidney, bowel, they were all in her chest. Pressing her heart against her rib cage and blocking any potential lung growth. She was basically born with one lung. Bella struggled immensely right away. Dr. Kays decided to put Bella on ECMO forty-five minutes after birth. She was on ECMO for fourteen days. The longer she was on ECMO, the harder recovery she would have, if recovery at all.

Dr. Kays performed Bella's surgery WHILE she was on ECMO. Unheard of. No one does that. He put her vital organs back in their spots and put a patch in place of her diaphragm, and attached it to her rib cage and spinal cord. Days passed. Weeks passed. Months passed. Dr. Kays reminded us daily that she was still very ill and will be for a while. But she was doing exceptionally well.

Today, Arabella is absolutely amazing. Of course, she may have minor issues in the future, but if this terrible defect was a magazine, Bella would be on the cover. To think we were so close to losing her. So close to not giving her a shot to survive.

We are here to tell you today that THERE IS HOPE. THERE IS A CURE. DONT GIVE UP. GIVE YOUR CHILD A CHANCE. There are so many people to thank! The list would just keep going! But Tiny Hero was there to be a shoulder to cry on. Tiny Hero was there to lend a helping hand. Tiny Hero was there when we had questions.

There are truly so many people involved in this little angel's survival—friends, family, and co-workers. We are so blessed to have you in our lives. We hope Bella's story will help.