Athena’s Story - Congenital Diaphragmatic Hernia (CDH)

I found out I was pregnant on September 8th, 2020. We were just thrilled to be pregnant again. We had lost a baby back in May of 2019 to a miscarriage. So we were also very nervous and cautious that I would have another miscarriage, but everything was progressing very smoothly, and we were due May 18th, 2021, with our sweet baby girl.

During my pregnancy, all of my appointments and ultrasounds were great. They didn't catch anything in the ultrasounds, and she was growing as she should. No complications whatsoever!

Come around to her birth, she came early, and I gave birth to her naturally on May 7th, 2021, at 2:13 am, weighing 6lbs 3oz. She was struggling to breathe and make her first cry. She was trying so hard to. They gave her a couple of seconds to see if she would get it going, but she couldn't, so they immediately cut the cord (dad didn't get to) and took her to do CPR to stabilize her. They took her out of the room, and we didn't get the news until about 2-3 hours later that she was an undiagnosed Right CDH. Later, I found out that 50% of her liver and some of her large and small intestines were up in her chest. She got transferred to John Hopkins All Children Hospital in St. Pete, Florida, 5 hours after her birth. We were finally able to see her before they flew her over. And oh boy, were we so lucky to be living in Clearwater, FL, so we weren't too far from the hospital.

It was very difficult to process and handle being without our baby girl, Athena. All of the first special moments that we had missed. All I desperately wanted more than anything was to hear her sweet cry and hold her.

She received her repair by Dr. Kays on May 11th, and she ended up getting the patch as the hole was too big to close with her muscle tissue inside.

Recovery has been great and going smooth. She got extubated on May 28th and was put on CPAP. We got to hold her for the first time the next day She got off CPAP and on the nasal cannula on June 4th and we were able to start breastfeeding successfully. Gaining weight has been a slow process, but we are working on it. She stood at a standstill with her feeds and we started talking about a G-Tube. She started improving slightly, but once July 1st hit, she started having some trouble. She was having some episodes of bradycardia (where her heart rate would dip low). She was super irritable, harder to console, and her stools weren't as they should be. We tried figuring out what was wrong but couldn't. She ended up pausing feeds for the night of July 3rd and getting put back on CPAP on July 4th. It seemed to help her a lot because she didn't have to work as hard. We slowly resumed her feeds that morning and built them up for the next couple of days. She improved and was taken off CPAP and put back on the nasal cannula on July 8th. She received her 2-month vaccination the next day and ended up having another episode, so they put her back on CPAP and kept her on it until her G-tube surgery.

She had her G-tube and Nissin surgery on July 13th but they decided to keep her on CPAP for a while. After recovery from the G-tube surgery, we got back on the nasal cannula and started working on our feeds and learning how to use her G-tube. The G-Tube made things easier for her feedings and gaining weight. All we needed was for her to gain weight consistently and we could come home.

That very special day was August 2, 2021. We did get sent home on oxygen, which she is on all the time but at a very low rate. She did great with the first car ride home and we're incredibly blessed to have her home with us!

We're still working on her feeds. She does overnight feeds through her G-tube for whatever she doesn't take during the day. We're hoping that we can get her G-tube removed once she starts taking full feeds orally. As of right now, there is currently no talk about getting her off the oxygen. She is currently four months old as of September 7th.

She does not enjoy tummy time very much but loves to stand and sit up with help. She always wakes up happy and every day is a blessing for her to be home, alive and healthy for the most part.

This journey hasn't been easy, but you never know about things like this until it happens to you—all of the sleepless nights at the hospital, surgeries, all the waiting, the nerves. The list could go on and on... Every CDH journey is different, but we are so alike in many ways. I salute all the parents who have a CDH child and push through because we are strong. Having a support team has been incredibly helpful to have. Thank you for being there!