Friday, October 21, 2005

Our Son

The baby's heart could not be clearly seen at the routine ultrasound that we had on 10/17. As a result, we were referred to a perinatologist for a Level III ultrasound, who we saw yesterday. While there, we received some difficult news that I would like to share with our friends and family.

Our son Drew has CDH--congenital diaphragmatic hernia. There is a hole in the left side of his diaphragm which allows the stomach and intestines and maybe the liver up in the left side of his chest. This pushes his heart to the right. It also does not allow space for lungs to grow normally. He will hopefully be fine until birth when the lungs have to take over. The undersized lungs are the main issue with heart defects being secondary. About 25 percent of cases are genetic and it occurs in 1 out of 2500-5000 births, depending on where you get your statistic. My doctor feels that our risk that this is genetic rather than just an anomaly are around 5fter looking at Drew. I don't know how he figures this, that's just what he said--I was in too much shock to question much.

Many children with CDH have other abnormalities--up to 95 percent that survive will have long-term digestive and respiratory problems. The good news is that Drew does not appear to have any fluid build-up around any of his organs, a common malady with CDH. Drew's odds of survival, according to the perinatologist, are at 50 percent. That could mean minutes, hours, days, months, years, etc. No one knows.

After birth, the baby faces possible placement on ECMO (heart-lung bypass) due to lung size/capacity. Raymond spoke to the pediatric surgeon at OU today and if Drew does not have to go on ECMO, his survival chances go to 75-80 percent. If he goes on ECMO, they drop to 33 percent. He will face surgery in the days after his birth and likely more at later dates. If he survives, he could have heart problems, kidney problems, respiratory problems, developmental delays, the list goes on and on. Or he could be fine, aside from tiring easily and breathing difficulties.

We were basically given two options: termination or attempt a live birth. After a very difficult night, we have decided that termination is not a route that we can take. There are various reasons we decided the way we did but it comes down to my personal feelings on termination and the procedure itself--not pleasant to say the least. I need to see and hold my son, regardless of what happens. I will remain under the care of my team of doctors and more than likely give birth at OU Children's Hospital, unless we decide on another medical center. Right now, Raymond is very comfortable with the surgeon he spoke to at OU and I will be meeting with him at a later date.

We were also given the choice to have an amniocentesis to check for additional birth defects. After my initial hesitation, I have decided to have one and it is scheduled for November 3. The perinatologist said he didn't *see* anything else on the U/S, but that's hardly definitive. He thinks that Drew's brain, spine and kidneys all look fine at this point and are measuring normal.

After the amnio, it's a waiting game. They have stopped doing surgery while in utero as the results are not any better than waiting until birth, except in certain circumstances and the surgery is only done in San Francisco and Philadelphia. OU Children's Hospital is a level III neonatal center with ECMO capabilities. We are very lucky to have them in our area, not very far from our home. They see 10-15 CDH babies a year and currently have 2.

The bottom line is that, if Drew manages to survive birth and surgery, he is facing weeks, maybe months, in the hospital. Please keep him in your thoughts. We will know more about the severity of Drew's hernia and whatnot as the weeks go on.

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