Hi everyone! I posted last year about fluid being discovered around my baby’s heart during my second trimester. I never posted an update but figured doing so might help someone else who went through what we did.

So the ultimate diagnosis ended up being a severe Mediastinal Congenital Diaphragmatic Hernia with pulmonary effusion. My son’s liver developed entirely in his chest. Initially the Doctors in our hometown diagnosed him with cardiomyopathy, Hydrops Fetalis, and CDH. They said his heart didn’t squeeze well and that he wouldn’t make it to 28 weeks gestation. I started looking at case studies and found there were some therapies that might be helpful but my MFM was less than helpful, so I reached out to many of the authors of the studies and 3 of them suggested we go to Texas Children’s Hospital in Houston.

There the Doctors dismissed the Hydrops and Cardiomyopathy and gave him a better chance, they were also able to narrow down what type of CDH he had, which I mentioned earlier. Mediastinal CDH presents in less than 1% of cases. They said placing a shunt or trying to drain the effusion wasn’t necessary at that time, so we went back to our home town of Ft. Worth.

My MFM planned for induction at 38 weeks, but at 37 weeks the children’s hospital told us he had no lungs and his case was “hopeless.” So we went to Houston where the CDH surgeon gave him a better chance, but he said the outcome of his birth can’t be predicted. He had only ever seen 3 cases or such severity, with ours being the 3rd.

Amaro Evander was born at 39 weeks gestation vía cesarean. He let out 3 cries and was intubated immediately. ECMO was never needed and he stabilized enough that he received his hernia correction surgery at 4 days old.

When they opened him up they discovered that his lungs were quite well developed, but they had just been compressed due to the effusion. They also discovered that he had practically NO DIAPHRAGM. Like none. There was so little tissue that they were unable to attach the mesh to it and had to place it under his ribs. The surgery was a complete success despite being difficult.

At almost a month old the Dr’s tried Cpap but it failed after less than 24hrs because he didn’t have the capacity to breathe on his own so he was placed back on the hospital ventilator. It was then decided he would receive a tracheostomy and would go home on a home ventilator because he was on the lowest ventilator settings and was on room air.

We have been home from the NICU since November, with only one hospital stay following that due to him outgrowing his tracheotomy size.

Despite what is on paper Amaro is very healthy and is pretty much a normal baby. He’s learning to crawl, he’s eating orally and is thriving. His vent settings have been weaned twice and he can breathe pretty well off of the vent, we will know more at his next ENT visit but it’s possible he may only need the vent at certain times of the day.

I wanted to share our story in case there are other parents here dealing with CDH or Vent/Trach kids. We have a Facebook and an Instagram about our son’s story, if you’d like to learn more just DM me for the link.

Thanks!

Edit: Thank y’all for the awards and kind words!!

Edit 2: Forgot to mention we are also on TikTok lol