Daniel Bodenmiller

Daniels Story

Born May 26th, 1996

Our son Daniel had been diagnosed with a vein of galen malformation. I gave birth to Daniel on May 26, 1996, at Stonybrook University Hospital. At my 36th week sonogram it was discovered that Daniel had swelling on his brain and that his heart was beating too fast. It was then decided immediately that I needed to deliver quickly, rather than waiting. Now I’m wondering if I the doctors should have acted so quickly.

When Daniel was born he was 8lbs. 2oz. and looked to his Dad and I as a perfectly beautiful healthy baby, especially considering he was born a month earlier then expected. Shortly after his birth when I was holding him the nurse indicated to me that he was having a seizure and immediately took him from me. After a CT scan it was revealed that he had this condition known as a vein of galen aneurysm. We were told at the time that there was only one doctor in the U.S. who was knowledgeable and capable of performing a surgery on a newborn with this condition, Dr. Alejandro Berenstein, at New York University Hospital. The procedure was very new at the time and not approved by the FDA. My husband and I contacted Dr. Berenstein and begged him to perform the surgery. After he reviewed all Daniel’s CT scans he agreed.

Because of Daniel’s heart condition it was suggested that we transport him by ambulance rather than air ambulance. My husband, a police officer, contacted his PBA, and Daniel was given a police escort all the way to NYU during rush hour traffic. The first time we met with Dr. Berenstein was in a small room with Daniel’s CT scans all around us. To this day I will never get over that overwhelming threat.

On June 1, 1996, Daniel had his first embolization which was we were told successful. Dr. Berenstein was wonderful, compassionate and so understanding. His team of doctors and nurses were unbelievable. Then on June 5th Daniel was to have a second embolization. On our way to NYU we received a call telling us to come right away, that Daniel was not doing well. Once again we were asked to come into the x-ray room and again Daniel’s CT scans were surrounding us. Daniel’s CT scan revealed tremendous damage to his brain. Dr. Berenstein explained to us that the portion of his brain that was damaged was his emotional and behavioral side. The one thing I remember most was being told that he would never tell us that he loved us. Dr. Berenstein asked that we think about discontinuing any further embolizations. It was up to us now to play God, which we could not do. I decided that I could not bear to see Daniel with so many tubes and that it was not fair to him. If God chose to take him then I have no control. All tubes were removed and I was finally allowed to hold my baby in my arms and rock and sing to him. My beautiful little baby boy died in my arms shortly after, he was only 10 days old. My angel got his wings.

I often think if I had not forced a delivery I would have had him until his normal delivery, another 4 – 6 weeks longer.

I am grateful for Dr. Berenstein and his staff for all that they have conquered with this new procedure. We only wish Daniel could have been a good statistic rather than a poor one.

Thank you for allowing me to tell. I recently only had the nerve to get on line to find out if anyone else has had a similar experience. I have gone to bereavement groups, but it feels good to share this and to know we are not alone.

Daniel is missed by us so very much. We think of him always and we will forever

Thank you and God Bless, Donna Bodenmiller

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About vogadmin

Vein of Galen UK is a website dedicated to families and sufferers of Vein of Galen malformation all over the world. We provide information and support for families affected by this condition.
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4 Responses to Daniel Bodenmiller

  1. Jenny Nelson says:

    Hi Donna,
    Our story is very similar to yours, your little girl Maddi was diagnosed at 36 weeks with vein of galen, she was delivered via c section, and taken straight to NNICU. Although is was in “controlled” heart failure she was doing well, and we were allowed to take her home 1 month later, but 3 days later we were back in hospital and on a ventilaotor! she had her first embolization and they closed off 2 main feeders, another op days later and they closed off 4 feeders. She was doing well and off the vent and we could not have been happier, this was however short lived and she was back on the vent within 5 days. We live in South Africa and there are not many dr who deal with this condition, and so instead of her having anothe op they said traceomalasia ( when the trachoe is enlarged from being the vent for a long period of time) was to blame for her having to be on the vent again, so she ended up having a tracheotomy, and all the time was was suffering tremendoulsy, they then decided that she needed another brain op, and this is when our world fall apart, they called us in and said that her brain was severly damaged, and that if she survived she would have severe cerebal paulsey. We had to make the very difficult decision, as did you, to terminate life support. i held her for the last time and watch her die in my arms, something i will never get over and still battel everyday, its been 2 months since she past and the pain is unberable. I often wonder if we had her in the ststes or France if there would have been a different outcome.

    Jenny

  2. Donna says:

    Jenny: I’m so sorry I only noticed your comment. My direct e-mail is dmbody@aol.com. Please, please feel free to write me any time. I truly know what you are feeling. Your heart is aching so badly. My Daniel is now gone 15 years already, which I cannot believe, and my heart still aches. His anniversary was just this past weekend. I hope you have Faith and that your baby Maddi is in a much better place. I could not bear to see my Daniel with the tubes and wires. When I got to hold him for the last time, they removed everything from him and I was able to cradle him, just like any Mom cradles their newborn. I sang to him until he died in my arms. It is something you never get over, but I would not have it any other way. As you too will realize she would not have wanted it any other way, but to have her mommy hold her and tell her how much she was loved and will be missed. I know too your sense of wonderment if in fact you had brought her somewhere else, to someone else, had done something different, that the outcome would have been different. I guess we really never know, except that you loved her enough to let her go. It is the most difficult decision you will hopefully ever have to make in your life, but it wasn’t a selfish decision, you knew that Maddi deserved better. I never wanted to have to play God, or make such a decision. I often wonder what life would be like with Daniel, but I always think in the positive, not with tubes or wheelchairs, breathing equipment, etc. I want to think of him running, playing and being a boy. Maddi will be in my prayers and will you and your family. Feel free to e-mail anytime. In faith and prayer, Donna

  3. Jenny says:

    Hi Donne,

    I sent to a mail, but it was returned , saying “permanent failure” please let me know if maybe you did receive it?

    Thanks
    Jenny

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