Congenital Diaphragmatic Hernia Group

I just wanted to introduce myself. I'm Debbie, I lost my granddaughter to CDH 5/24/08. She was born at U of M hospital in Ann Arbor, Mi. She was born 5/2/08. She had one of the worse cases they had seen. When she was born she was immediately put on ECMO. She just held her own, she didn't get better or worse. She was a fighter they said. They trialed her off ECMO everyday. She did progressively better each time. On 5/22 she was trialed off and did really well. The protocol was if she stayed off 24 hours they would take her off ECMO. She did! They removed the tubes and she was doing well. They were calling her the "miracle baby". By sun evening she was not doing well. Her oxygen levels were very low. They had the vent pumping very hard. It was a horrible site! She passed away on mon morning,(the holiday). We were all devastated! The doctor's and nurses kept telling us how sorry they were. We are all getting better each day. With a strong belief in God, we know she was taken for a reason. I hope I didn't dash anyones hopes. But, believe me everyone's situation with CDH is different! Just leave it in God's hands.

Hi Debbie, My granddaughter too has become an angel as a result of CDH. Kayla's situation was similar but we were fortunate enough to bring her home for a year (if you don't count the multiple hospital stays).Kayla had no diaphragm when she was born. She was on ECMO, had her surgery and eventually came home at 2 months. But as a result of the CDH she had severe pulmonary hypertension.She was on 24 hr. IV medications to help and was awaiting listing for a heart/lung transplant which was our last hope.  She couldn't wait long enough. She died peacefully in the arms of her parents this past week. Her doctor eulogized her at the funeral and said that Kayla always showed "joyful courage". She was always happy, smiling, loving. We were truly blessed to have had her. My sympathy goes out to you and your family . How are you surviving?  It is just so hard. I'm trying to be strong for my daughter and her husband but it's so hard. Right now I have mixed feelings . I'm mad at God that he took "my little angel" but glad that she is in his arms and not having to fight every day of her little life.   Janet

Janet, My heart goes out to you and your family. I just finished my morning cry. I too am mad the God took our "cutie girl". Don't get me wrong I have a strong faith in the Lord, just mixed feelings daily. I am also glad she is no longer suffering. It hurt my heart to see her hooked up to so many things. Amaiya's official cause of death was pulmonary hypertension/CDH. My son and his girlfriend are doing well. It's me and Amaiya's other grandma that seem to be not doing so well. I don't know how the kids are at their house, I just know when we see them they seem to be adjusting ok. I can't talk about Amaiya without losing it, they comfort me. But through prayer and support like this site and the CHERUBS site I'm getting through. We just had her headstone put down last friday, it's beautiful. I will add you and your family to my daily prayers! Take Care. Debbie

Thank you for your prayers. Only 2 grandmas would be up at this time of the morning spilling out their emotions. My daughter and her husband donated Kayla's eyes and her heart valves. This helps . knowing that 4 little children will be able to see and that someone elses child can use part of her wonderful heart. Her life will go on in them. I just hope mine will be able to recover.

LOL! Thanks for my first laugh of the day. This is the first thing I do when I wake up, check the 2 websites! I love talking to other people going through what I am.