Reese's CDH Story - LCDH
April 7th, 2017…a date I will always remember. On that day, we were scheduled to have our routine 2nd trimester ultrasound that would confirm the gender. We had been given an 80% guess at our previous ultrasound that is was a girl. We already had a named picked out...Reese Taylor Frascona.
The morning of our appointment came and we were so excited! I had held off on buying anything until we knew for sure it was a girl, and I think my husband was still hanging on to the 20% chance that it could be a boy. The ultrasound tech confirmed almost immediately that it was indeed a GIRL! We were ecstatic! A few minutes later the tech grew pretty quiet and kept scanning for what seemed like forever. She quietly stood up to let us know she was going to get the doctor, so we could go over the images. Before she walked out, she looked at us and said "I did want to tell you guys that I did see something concerning with the stomach, and I don't want you to be taken off guard when he comes in and starts talking about it".
Immediately, my heart dropped. I had never been more terrified. I was a happy, healthy 25 year old, how could this possibly be happening to me?
The doctor came in quickly after and began going over the images with us. He told us he believed that Reese had a birth defect called Congenital Diaphragmatic Hernia. We were shocked, confused, and completely clueless of exactly what that meant. Our doctor here in Tallahassee explained very little and did not have much information for us other than he would be referring us to Shands in Gainesville for a consultation. While waiting for our appointment at Shands, we heard of Dr. Kays through a friend of a friend. We decided we would have a consultation with both hospitals and make a decision from there on where to go for treatment. The physicians at Shands were great, but once we met with Dr. Kays and Joy we knew there was no question that All Children’s was where we needed to be. They were both so genuine and encouraging. Joy gave us a tour of the NICU and some information on Tiny Hero and everything they do to help expecting parents.
Reese was diagnosed with left sided CDH with stomach and small bowel up, thankfully the liver was down. He gave her a 98% survival rate and only a 20% chance of being placed on ECMO.
Plans were made, and at 36 weeks pregnant we packed our bags and left Tallahassee to make our temporary move to St. Petersburg. I was induced on August 16th, and on August 18th at 2:35pm the most beautiful 6lb 2oz baby girl came into this world. She let out the smallest little cry and was quickly taken away to be assessed and intubated.
The first 24hours went well, as expected but day 2 and 3 were pretty scary. She had to be placed on the high frequency oscillatory ventilator. Dr. Kays spent 3 nights at her bedside doing everything possible to keep her off ECMO. He informed us that she was a lot sicker than we anticipated and was not improving much, so on day 4 he decided to do her repair surgery. The surgery went well but surprisingly she not only had her stomach and small bowel up but also her spleen, colon, and even 30% of her kidneys. She only had about 15% of her diaphragm; the rest is now made up of a gortex patch. The night after her repair, her oxygen saturations were steadily dropping. It was no longer safe for her brain, so at 3:30am Reese was placed on ECMO. While on ECMO, she had a few complications. She developed a pulmonary bleed and fluid also began to accumulate in the chest cavity resulting in her needing a chest tube. After 13 days, Reese was taken off ECMO and things only went up from there. A few days later, we were transferred to the NICU. On day 24, Reese was extubated and at 25 days old, we were finally able to hold her! She was on CPAP for 4 days and was then placed on wall oxygen. Day by day more things were taken away. Feedings started off a little rocky, but once she got the hang of it, there was no stopping her. On day 48, our miracle baby was discharged on minimal medication and NO OXYGEN.
We have been home a little over a month now and Reese is thriving. She is steadily gaining weight and hitting milestones every day. She is defying all of the odds. Life is such a precious gift, and she fought so hard for hers. She does not let CDH define her and what she is capable of. While I would never wish these diagnoses upon anyone, it has changed our family for the better in so many ways. We are so thankful for all that Tiny Hero, Dr. Kays, Joy, and the entire staff at Johns Hopkins All Children’s have done for us. There were times we didn’t think it was possible, but thanks to them, we got our happy ending.
Quick Look Information
1. Liver down
2. ECMO needed
3. Left sided CDH
4. LHR of 1.1