faith milliner

Faith,
I am so sorry for the loss of your sweet angel. It must have been and still be so very hard (and I know that is not a word that is even close to strong enough for the pain) to not have known and to have it all happen so fast.
My baby is a right-sided CDH survivor. At Dakota's 20 week ultrasound, they also saw nothing out of place ...according to the OB the heart had not shifted yet, and she did not see anything in the chest. We had another ultrasound at 29 weeks, for no other reason than that my OB liked to do frequent ultrasounds, and that is when she discovered that the heart had shifted (as you described) and she saw the liver in the chest. I really feel that we just got really lucky. I have done a lot of research and Right-sided CDH is very, very hard to diagnose because the liver looks like lung on an ultrasound (aparently it has the same density). Also, when it occurs after 20 weeks, most OBs have no reason to order another ultrasound. This is not something that you or anybody could have prevented. It is so not fair, and I am so very sorry. I will pray for peace for your family. Please feel free to write me at jennifertrafton@hotmail.com with any questions or if I can help in any way.
Hugs,
Jennifer
Mom to Dakota 12-25-2008

Faith,
My son, Ethan (19 months now) is a right sided cdh survivor. At my 20 week ultrasound, my Ultrasonographer found that his heart was shifted to the left and that his stomach was toward the middle of his body (it was sort of floating with so much room in his abdomen). She didn't say what the problem was but we were sent to a perinatologist who had a hard time detecting the liver but told us since the heart was pushed to the left, something was there and that the worst thing it could be was a diaphragmatic hernia. On a visit to the perinatologist at 24 weeks, he told us he was 98 % sure it was a R-CDH. He referred us to the Children's Hospital of Philadelphia where we had a fetal MRI done. The doctors there told us that nearly his entire liver, his gall bladder and some bowel were in his chest. They gave the news that he only had a 10% chance to survive. Then Ethan surprised us again by arriving 2 months early. (Ethan was treated at Egleston in Atlanta. We had planned on going back to CHOP but since he came early, he was transported to Atlanta) The doctors in Philadelephia told us that it is all in God's hands. That this birth defect humbles them greatly. I can't pretend that I know what you and your family are going through, but I wanted you to know the story and that this is no one's fault. I do feel really blessed to know that something like this was going on and we could be more prepared if it had not gone the way we wanted it to. Prayers are going up for you and your family. Lynn Howard

I just dont understand how babies still have healthy heartbeats if their heart is pushed out of place. Or why little Emily's uterus lining hemorrhaged? I have so many unanswered questions and when i asked the doctor...he couldn't answer them. Was anyone's baby given 10,000 units of heprin at one time?

Faith,
I know Ethan got some heparin in his IV's and artery lines to keep them flushed but I don't know how much. After his second repair he got blood thinner shots twice a day to prevent blood clots but I don't remember how much he got with each shot.

She was given the heprin 16 times and she was not alive for 24 hours.

Faith,
[color=black:1d0c60a074]Try googling 'overdose of heparin in neonates'. Look for the article from heartwire or theheart.org . It talks about how a dose of 10,000 units is sometimes mistaken for a dose of 10 units. This is what happened to actor Dennis Quaid's twins in 2007.

I hope you can find some answers and comfort.
pamela[/color:1d0c60a074]