Our little girl Esther's CDH story: Results of the Amniocentesis

Thursday, January 5, 2012

Results of the Amniocentesis

We found out a few days after Christmas from our genetic counselor, that little Esther does not have any further problems besides CDH and a left club foot. We believe this is a miracle knowing that it is pretty common to have other abnormalities with CDH babies. There was a 33% chance that she could have something else wrong with her. The last time we had spoke to the UW doctors, they had said I would hear from them in 7-9 days and I knew that would be right before the holidays hit. When they had not given me a call till a few days after the holiday, I feared that they just didn't want to share more tough news to us during the holiday. Praise the Lord everything came back clear and we have nothing to worry about for future babies too.

Jason and I are still doing great with the news. I try not to think about how hard it is going to be when that day comes for Esther to be born. I know it can leave me feeling discouraged and scared for what is ahead. Majority of the time, we do not dwell on any of it and have stayed focused on preparing for the race that is ahead of us. It feels as if Jason and I are preparing for a marathon (which we have done a few times) and we are just bracing ourselves for the unknown. We keep asking the Lord to show us what we need to do and learn for when that time comes. We want to be fully prepared spiritually, mentally and physically.

I went for my first run this last Saturday since finding out the tough news and felt the Lord speaking to me in so many ways. I will share that when we get closer to delivering the baby. Jason and I are both reading through a study on David right now and feel encouraged by 1st and 2nd Samuel. We both know that just because we are Christians does not guarantee that Esther will live or even live a good life. But we know that she will be a miracle in any outcome the Lord gives us. I will be honest though... it was tough during the holidays and being at Christmas church programs and seeing healthy children running around and wishing we had the same outcome from the get go. But, we are still okay with whatever the Lord brings from this.

Jason and I went to a regular doctor check up yesterday. They told me I have gained a little too much weight in the last 4 weeks. I had to remind them that we just came out of the holidays and I couldn't help that everyone from my neighbors to my family members kept giving us goodies. Also, it was hard for me during the last 4 weeks to be active. I wanted to spend as much time with friends and family during this hard time so I didn't have to be alone. I am also now stuck in the control booth at work which means almost 12 hrs of sitting on my butt. At least I don't work everyday of the week. But, I am now back to exercising and keeping healthy. The doctors want me to gain the least amount of weight needed to maintain a healthy natural delivery so the baby has more opportunity to do well from birth. Esther's heart is still pumping strong and sounding great. We go to another doctors apt in Seattle on January 17th. We will get a more in depth at look at the lungs and heart of Esther and will meet the team of surgeons among many other things.

Lastly, here is another video I found helpful and useful of another little girl that has the same thing as Esther. Thanks again for your love, support and prayers!!!!

http://vimeo.com/5626814

2 comments:

MarJanuary 10, 2012 at 8:14 PM
We pray for you guys daily and sweet Esther. Praying for your minds and hearts to be protected, that your focus would continue to be on the Lord and that he would give you the faith to trust him in these months of waiting to meet Esther. And that He would meet you in your fears and anxiety and calm your hearts and hold them so close to Himself.

That video made me cry for that sweet baby, and your daughter too. Praise Praise Jesus that he loves his children more than we can ever fathom and that he has placed you guys where you are at and with access to great medical care that can help the fight for her life.

love you.
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EvaJanuary 26, 2012 at 10:14 PM
That is truly a miracle. Our son was one of the babies whose CDH was caused by a genetic abnormality which took a lot of the lifesaving techniques (such as ECMO) off the table. Our Benjamin did not make it because he was disqualified from many treatments. The fact that your Esther has a chance is HUGE and I am so happy to read this. Best of luck to you and your family!
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What is Congenital Diaphragmatic Hernia (CDH)?

A congenital diaphragmatic hernia (commonly known as CDH) is an opening in the diaphragm (The dome-shaped muscle that separates the chest cavity from the abdomen.) It occurs at approximately 9 weeks gestation, when the diaphragm, for an unknown reason, fails to close completely. The hole allows the abdominal organs to push into the chest cavity. CDH is a life-threatening birth defect because it limits the growth of the lungs.

CDH occurs in every 1-2500 live births in the United States. Approximately 1,800 babies are born each year with CDH. Approximately 50% of all babies born with CDH die. Luckily in Seattle where were told we have a 80-85% chance they will survive. CDH happens just as often as Spina Bifida and Cystic Fibrosis yet many have never heard of CDH. To explain it a little further:

The diaphragm is a muscle that separates the abdominal cavity from the chest. It’s a divider. At 8-12 weeks gestation, depending on what you read, this muscle develops and comes together, as it should. But sometimes it doesn’t. Nobody knows why, it is random. There isn’t enough evidence to suggest that it is genetically destined to happen, and it isn’t because of anything the mother or father did or didn’t do. The diaphragm simply forgets to close. In 90% of diaphragmatic hernia cases, this happens on the left side. It’s also more common in girls.

This happens at the same time that everything inside of the fetus is forming and finding their places, and if there’s a hole, sometimes organs will find their way through it. Sometimes the organ involvement is minimal, sometimes not. In any case, if there is anything that is supposed to be in the abdominal cavity but is incorrectly located in the chest cavity, it takes up valuable space that the lungs need in order to fully develop.

When a baby with known CDH is born, she has to be intubated and placed on a ventilator immediately. Crying can make the hernia worse. If all techniques of getting her adequate oxygen that way are exhausted, she’ll be placed on ECMO, which is a whole different monster. Once a baby with CDH is placed on ECMO, his chance of survival drops to 50%. ECMO comes with its own set of complications (and ECMO is a complication in and of itself), so we’ll focus on that if things get to that point.

The thing about hernias is that they don’t repair themselves. They either get fixed or get worse. Surgery is necessary to repair the hernia: Making an incision below his ribs, moving his organs into place, and connecting the tissue of the hernia (or repairing with a patch if there is not enough tissue to connect). The surgery itself is pretty straightforward, but the issue lies in his ability to maintain adequate oxygen levels.

Even if you move the organs back into place, even if the hernia is repaired perfectly…the lungs still missed out on valuable development while in the womb. The months following surgery are dedicated to recovery from surgery as well as ensuring proper oxygen levels. The average NICU stay after birth is 2-3 months. Babies with CDH may come home with forms of oxygen assistance if everything else is stable enough.

Our little girl Esther's CDH story

Rhonda and Jason

Thursday, January 5, 2012

Results of the Amniocentesis

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