Last week I felt the urge to post the following on my face book. ( see below /next post )
In response to this I talked to Amberlyn's mom.
Amberlyn's experience was very similar to Eliana's. ( Ecmo , failed surgeries etc,) Amberlyn was about to have her second surgery March 31 The docs had told her mother they were the best , but that they wouldn't be able to save Amberlyn's lung and that A.very well might die......
I begged Amberlyn's mom to send A.'s medical records to Doc Frank Hanley at Stanford . It was hard for her to even believe that Doc Hanley might be able to help her daughter when the docs here said they couldn't.
I told A.'s mom to also talk to 2 other mothers whose babies were send home to die and whose babies are alive and well because of Doc Hanley.
Well , she did talk to the 2 other mothers and she did send all A.'s medical records.
Doc Hanley just told her he can save her babies life and lung. He told her he had helped babies in much worse shape and that he was very confident that he could help her ! The same words he used talking to us when Eliana was almost given up... Eliana is singing and dancing as I am writing this.
I write this in the hope that more mothers in similar situations will read this.
My dream is that one day a docs loyalty to an institution doesn't go above the welfare/life of a child and that the docs will be able to refer patients to other institutions without being fired. That hospitals will work together instead of compete. ( in Michael's book "Walk on Water"you can read more about this )
I will post my facebook post in next post ( have trouble copying and pasting :0)
Thank you for reading this. Please spread the word !
POST Facebook
Message from baby James' mother
liljamesmommy · Pass a Note!
Posted 19 hours ago
We also found a miracle in Dr. Hanley at Stanford U in CA thanks to Astrid who already posted here. Our son was sent home to die according to docs in MD, but now there is lots of hope. We have actually moved to CA to have Dr. Hanley fix his heart. You have to check him out. The earlier you get here, the better. We waited 8 months too long and now our son is paying for it. Good luck!!
End quote.
Baby James had a full repair a month ago and he is home now !
The day after Eliana's first hospital found out we had send somebody to Hanley they called us and asked how our finances were and if we wanted to sit "around the table "........Not for a million dollars will we keep our mouths shut.
Soon Eliana will be able to give baby James a hug for the first time !
Praying many more babies will be saved.
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I pray with you that more babies can be saved from doctors and hospitals that are not experienced and refuse to tell parents their rights and options.
ReplyDeleteMy daughter is a perfect example as well. We were at a children's hospital here in Cleveland. They told us the day before she was scheduled for her Norwood (she has HLHS and multicystic kidney dysplasia) that they would not perform the Norwood and we should take her home. They told us that is she survived the Norwood she would die from kidney failure. Thank God she was doing so well (breathing room air and looked like my other kids when they were babies) because I decided to find another hospital and surgeon that would be willing to save my daughter. Dr. Mavroudis at The Cleveland Clinic Children's Hospital is my hero. He saved my daughter's life and she is almost 2 years old now. She has not had any problems with her kidneys (although it is a good possibility they will eventually stop working).
I will continue to get other opinions if I ever question anything regarding Hope's medical care...or that of any of my family. I never thought about it before. I trusted wholeheartedly the doctors at the first hospital. They know best...that is what I kept telling myself. I no longer believe that at all. I question every single little thing. I have pissed off nurses and residents and will do so again if I think it is necessary. I will no longer believe that any doctor knows best.
Thank you for this post. It brought up so much for me. I tell everyone that will listen that they have every right to get other opinions and they should NEVER feel that just because they trust a doctor that they doctor knows best all the time.