Extreme Births on TLC/Discovery Fit and Health

So I was watching Discovery Fit and Health yesterday (they were airing a lot of baby/pregnancy shows) and there was one that I hadn't ever seen before. It was called Extreme Births. It had 4 stories of families going through rough times during their pregnancies. I love all birth related shows, and this one seemed to fit right along with what we are going through, having our little guy due in 2 months. I was really excited to watch it.

First there was a baby that had developed a large tumor on her tailbone region that had to have surgery to remove the tumor at around 25 weeks while she was still in utero. Then there was a couple that was expecting sextuplets and had to deliver very early and have them in the NICU for awhile. Needless to say, I was shocked when the 3rd story was about a baby named Charlie who was diagnosed with CDH!

However, I was really disappointed with the way that it was portrayed. I don't believe that they ever said the words congenital diaphragmatic hernia. They did show a computer animated graphic though, that showed the hole in the diaphragm and the organs pushing up through.

But perhaps the most frustrating part for me is that they kept saying over and over that this baby had a 0% chance of survival if actions weren't taken while he was still in the womb. They ended up inserting a small balloon into his windpipe to keep the fluid in the lungs and try to get the smaller left lung to grow. It did help that lung to grow in his case, thank goodness. They said that after the procedure, he would have about a 30% chance of survival. That still seems pretty low to me, if the baby was otherwise healthy.

But after the birth, it showed him in the NICU and he looked like he was doing pretty well. But it never really followed up on whether or not he got to go home. And it never once mentioned surgery to repair the diaphragm. This was my first time ever seeing something like this on TV, and it was just really disappointing for me. Or maybe it's just that it scared me pretty bad. The fact that they were going on and on about how the balloon procedure raised his chance of survival, and that there was absolutely no way that he could have survived otherwise...

That's not what I have been hearing from my doctors. And the show didn't mention anything else being wrong with the baby, so I was just really surprised to hear all of this.

Has anyone else seen this show? I think it originally aired sometime last year. Probably on TLC. I think that the parents of this baby were from the UK. They had accents. So maybe things are different over there? It just really surprised me, because it contradicted most everything I have heard from my doctors.

The balloon surgery is not done at very many hospitals in the US, very experimental and to qualify for this type of surgery the CDH case has to be very severe, for there are risks for mom and baby when the surgery is done. The do the surgery at UCSF and are doing trials at Texas Children's. I am not sure if there are others out there still doing the surgery?? St. Louis does a gel procedure, not a balloon. Doctors here in the US say it doesn't increase a baby's odds much, the reason so many hospitals do not do this surgery. A good friend I met through CHERUBS, was the first trial at Texas Children's last year and her baby Milan is thriving and now home. They lost their first son to CDH and when Milan was also diagnosed with CDH and it being very severe they opted to be included in this trial, so happy they did.

The UK does the balloon surgery a lot in CDH cases. We have several parents in old threads here at CHERUBS that talk about the surgery and what they went through. Many of the babies that do the balloon surgery have been given very low survival rates and that is why they choose the surgery, to try to improve them. The surgery just allows the lungs to expand more and grow with everything up in the chest cavity.

TV shows do not get CDH right at all...it is very frustrating. So much needs to be done for awareness and in the right way. I have never really seen CDH portrayed on TV the right way, in any medical show or TV drama show.

I think you are safe to listen to your doctors and put faith into them. I always question who determines how severe a CDH case, it is just a percentage of survival, a person's opinion. They use the LHR and tests, but there is so much a doctor cannot predict, if the baby will have pulmonary hypertension, issues with the medical intervention, infections, and the list goes on.

Try to think positive thoughts....your little guy is going to come out fighting and your doctors will do everything possible for your little guy. (((HUGS)))

Thanks for the response Tracy. I think that they must have been withholding some information about the severity of the case for this little baby. I guess that is why they kept giving him 0% chance at life if they didn't do the procedure. But it was a scary thing to see.

I had heard of the balloon surgery before, but figured that it was pretty rare since none of my doctors have ever mentioned or suggested it. After having my amnio done (it was very traumatic for me), I don't think that I could ever opt to have an in utero procedure unless it was absolutely necessary. Thank goodness that some babies (like little Milan!) are able to have it done though and that it increases their chance of survival!

I hope in the upcoming years that there can be a lot more CDH awareness. I watch those type of shows on TLC and Discovery Fit and Health all the time, and they feature all kinds of disorders. It would be wonderful if they could make something that portrays CDH accurately.

I agree, I would like to see a show on CDH that portrays CDH accurately from the start to the end. I like watching those health shows too!

Hi Emily,
My daughter is now 10 so I know a lot has changed. But we were told at 3months in eutro that our baby had LCDH. We were told there was options of going to the US to have that surgery done to try to fix the hernia in uetro. Our Dr. Told us there was really no sold evidence that this increased any odds. I am from Canada and was told that I would have had to stay there after the surgery and deliver there. The emotional loss of friends and family not to mention financial chaos that would have caused we ruled it out. But I agree with Tracy that ever case is different and Dr.'s give opinions that can be wrong. Right before my daughter was discharged to a closer to home hospital, we had the neo natal head surgeon call us in to show us her first x-ray. We had no real idea how luck we were till that moment, everything that could be in her chest cavity was and her heart was shifted. He said none of us thought she had a chance, they didn't think she could possibly have any left lung development. But she did 50 percent and that is why she is our miracle.
I will be praying for you and your family. Keep positive and ask lots of questions.