Support Gracie's Journey to Health and Home

I am doing this go fund page for my sister and her family . My sister and her family have relocated since November to Florida due to her daughter CDH diagnosis. Herself and my brother in law have not worked since then due to relocating and being there for Gracie and their son Carter . Here is Miss Gracie’s story through my sisters eyes.

On August 23rd 2024, at our 20 week anatomy scan, our sweet baby girl was diagnosed with CDH, Congenital Diaphragmatic Hernia. This is a rare birth defect that occurs when the diaphragm doesn't close properly during fetal development. This allows abdominal organs to move into the chest cavity which pushes against the lung and causes it to develop small also decreasing the amount of oxygen it’s receiving. This is a life-threatening birth defect that affects about one in every 3,000 pregnancies. It’s not the baby nor mother’s fault, and still has not been determined by research as to why it even happens.

After MRIs, heart ECHOs, many ultrasounds, and monitoring we found there was 40% of liver, the stomach, spleen, some small and large bowel all in her chest cavity. However, her heart was perfect and so was all of her genetic testing.

Overall she was perfectly healthy, which means we knew the only health concern and worry was to correct the CDH. We also knew in our hearts she was incredibly strong.

Immediately after birth, she would need surgery to move the organs below her diaphragm and patch the hole. She was given an 80% chance of being placed on ECMO, which is a form of life support to help her lungs and heart, to heal without stress.

We knew our baby girl needed the best of the best and we’d do anything we needed to get it. After extensive research and prayer, at 34 weeks pregnant, we temporarily relocated to John Hopkins All Children’s Hospital to see Dr. Kay in St. Petersburg, Florida. A pediatric surgeon who has treated over 600 CDH babies in his career and has over a 95 percent success rate even with most severe cases. They have their own CDH unit which means her own room and specialized care. She needed the best in the world to correct her defect, help her heal, and JHACH was it.

Our beautiful Gracelyn Marie Link,

was born 12/30/2024, 7lbs 13oz at 2:32pm. 40 minutes after birth, she was placed on ECMO, her surgery took place on 12/31/2024. From grade A-D defect, our sweet girl had the largest defect which was D.

Born- 12/30/2024

Surgery- 12/31/2024

On ECMO- 23 days

On Ventilation- 8 days

On CPAP- 9 days

Our little princess just came off of CPAP, she is already on wall oxygen (which is what she would come home on) and just started working on trying to eat! In our journey, we are at the final stage, the feeding stage, which they say can be a challenge with CDH babies and lots of patience as well as time is needed. We are still in the hospital at JHACH working on her eating, healing, and slowly weening off the rest of her medications.

She is doing so incredible! She has conquered all of this with ease and amazement, in such a short period of time. Words cannot describe how incredibly grateful and blessed we truly are. We are beyond in awe of her strength snd determination to overcome her CDH.

With CDH, she will always have a smaller lung, and will be monitored with regular check ups into her adulthood, but she will be able to live a perfectly normal life.

Through the power of God, prayer, faith, support, family, love, lots of tears, hope, our baby girl was saved. She is strong, healthy, and THRIVING. She is perfect.

Please continue to pray, we are so close to the finish line of being able to come home, we can feel it ❤️ #ourtinyhero #CDHwarrior #CDH #JHACH #ourprincess

Since this she has needed another surgery due to her acid reflux and now is has a GI tube which she will be coming home in and oxygen .

I couldn’t be more proud of my sister and brother in law . Through this they have sacrificed so much to make the best decision possible for their daughter. Miss Gracie is coming home soon and through hospital bills , relocating and having a rental and her coming home with a feeding tube and oxygen , they need medical supplies at home . Please support my sister and her family ! Anything helps and we are beyond grateful for prayers :)