Monday, May 29, 2006

Hospital Choice, Lacking ECMO

Last week, after our weekly appointment we talked to our OB (Associate Professor) and Chairperson Professor in a short time. Chairperson said that they may want to induce labor after 35th week. This was really frightened for us, because we have read a lot of writings from internet, and heard from another experienced doctor who is working at another big hospital that preterm labor shouldn’t be preferred in these type of deficiency. Baskent Hospital is good and well-cared place and we have gone there for about three years. Doctors know us. But the hospital hasn’t so much experience on CDH babies. We learned that they had 13 CDH babies for the last 2,5 years. Six of them survived. We went to other big hospital in Ankara. It was Hacettepe University Hospital. They have 1 or 2 patient in every month from Turkey’s different regions. But there are very crowded as a public hospital and we don’t want to go for a serious condition like that. We met pediatric surgeon in Baskent Hospital. He said that after surgery is more important than surgery. Its NICU and caring conditions seems more comfortable. We decide there for surgery if it will be possible. When we learned that there is no ECMO in our country, we were disappointed and very depressed. Maybe, this means “going to football match with missed staff”. We pray for that our baby won’t need ECMO.

Tomorrow or maybe Wednesday morning, doctors in hospital will be in a ordinary meeting and as we learned from our OB, they (our docs and surgeons) will talk about our condition.

Aytekin and Emel.

3 Comments:

Blogger Jana said...

I know the decisions that you face are so difficult. It's not right that as parents we have to make these decisions.

ECMO is a strange thing. The odds that it helps the child really aren't that great. We were told that it might help 33% of the children, or 1 in 3. Those aren't great for what the kids go through on ECMO. It is such an ugly, invasive process with very serious potential side effects.

I guess what I'm trying to say is don't pin all of your hopes on ECMO. Lauren posted some great information. Drew was on ECMO for 15 days and I don't know that I'd make the same decision again if given the chance.

You just make the best decisions you can with what you are given, as a parent. I wonder all the time if things would have turned out differently with Drew if we'd gone elsewhere; those "what-ifs" can get to you so please be confident in your decisions. Only you know what is the right thing to do for your family.

You are doing a great job as parents already! (And I really like the name Mert! I love what it stands for.)

Love,
Jana
Mommy to Elizabeth (8.24.03) and Drew (3.8.06-4.16.06, LCDH)

6:29 AM  
Blogger baby Jackson said...

Hello. First I would like to say that I am amazed and overwhelmed at the thought of getting prayers from so far away. Thank you very much for that. As everyone else has said the statistics say that ECMO does not increase the survior rate. We were on ECMO for 27 dsays, I truly belive that it saved my son, but there are also other things that could have been done, like a high frequency vent.
I also wanted to say don't get too down about the LHR number it is not a very good indicator. It is also not valid at all passed 30weeks. So with a late LHR there is no telling. This waiting time is very hard. This is an awful defect anyway you look at it. You said in your post that the hospital has had 13 babies and 6 surviors right? If that is correct thats good. That is unfornatley just how this defect is. No matter where you are the mortality rate for CDH is about 50%. The only thing you can do is chose a hospital you feel is best, and trust those doctors and other profesionals to do what is best for you and your baby. Best of luck to you and your family. I will pray for you as well.
Love
Kimberly
Mom to Jackson (LCDH 3/5/06)

8:31 AM  
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