Amelia’s CDH Story
On October 26, 2023, we took the dreaded drive to the Children’s Hospital of Philadelphia. Although only about two hours from our home, it felt like forever. In my third trimester, we had no idea at the time how drastically this appointment would change the course of our lives from here on out.
At 32 weeks pregnant, we got the diagnosis that our baby girl would be born with multiple birth defects. After a 10-hour day at the children’s hospital, test after test, we sat in a little room and told the news. Our baby would be born with a hole in her diaphragm, CDH, which caused her intestines and kidney to float up into her chest cavity, stomach, and heart to be slightly shifted out of place and ultimately block the right lung from forming. We were also told her spine did not develop correctly towards the tailbone. We were urged to move to Philadelphia for the remainder of my pregnancy, get ultrasounds twice a week, and eventually deliver at CHOP. We were given multiple different opinions on her outcome, her prognosis, and the severity of her defects and how they would impact her quality of life after almost my whole pregnancy appearing seemingly healthy. Our world had just flipped upside down, and nothing could have prepared us for the emotional and physical trauma of the uncertainty.
At no point in time was there a definite answer on how severe her CDH was, how no one caught this sooner, if she would ever breathe on her own, eat food someday without a tube, walk on her own, or even at all, have bowel and bladder function, be able to have kids of her own one day or even make it out of the surgery?
Fast forward a few weeks after her diagnosis on November 16, 2023 - coming four weeks early with a VENGEANCE, all the unknowns became the best possible scenario. Her CDH was moderate, the hole size wasn’t too big, and they could repair it easily using her own tissue. The hole was located in the back of her diaphragm, which helped her in the long run. This helped keep her liver and spleen in the abdomen, and her lung ended up being much more developed than it was appearing on X-rays. Her surgery was a success; she was breathing room air within three weeks, and she left the hospital without a feeding tube. Her spine did develop a little abnormally, but as of now, they don’t foresee any dysfunction to become of it. We truly had the best outcome in every possible way.
She spent a total of almost six weeks in the NICU, and you wouldn’t even know it! (Unless you see her battle wound on her belly) Amelia is almost four months old and absolutely thriving and doing ALL the growing baby things. I look at her with such admiration because all I see is strength in such a little body. She is alive and well, has the biggest smile and a budding, silly personality, uses those powerful lungs to let us know when she needs a bottle, and bears weight on those strong legs of hers. I look up to her and all that she has gone through in her life, and all those uncertainties I once had faded away.
She will see specialists for a long time and will continue to be monitored, but our baby girl is healthy and reaching her milestones. Her big bro is her best friend, her dog is her biggest protector, and her parents are grateful each and every day for our wonderful, resilient- Tiny Hero.
