Does anyone have a child with Antley-Bixler Syndrome or with a brain tumor?

Diane - posted on 05/20/2011

Thank you Tammie for sharing. I am so sorry for your loss. I have come close with my son so many times. He is 7 now and quite a little fighter. He's lost his eyesight last December. He still can't walk, talk or eat and still can't totally breath on his own. He still needs help of a ventilator. But besides all that he still can be a happy little boy who gives off so much love. I remember when I was pregnant with my son. The doctor said he looked fine. I was worried at that time that I could have another baby with a brain tumor. When my son was born we had no idea about his medical condition. We were in. Total shock. They worked on him for 3 hours and finally stablished him. Childrens hospital came and took him. Doctors couldn't tell me what happened or what was wrong. I just kept on giving them permission to run tests after tests. All they said was prepare and make arangements cuz they didn't think my son was going to make it. I didn't want to believe it. I prayed and gave home all the love I could. He's still here. But everyday is a God blessing. Truth be told I know how long I will have my son. Only God knows. I know that one day his lungs are going to get too tired. I just want to make him as happy as possible so he will always know how much his mommy loved him. I try my best to make both my kids happy. The way I see, is you have two precious angels with God. God bless you and you family. Thank you so much Tammie. You don't know how much it means to me that you shared with me.

Tammie - posted on 05/19/2011

Hi Diane. I just lost twins to Antley Bixler syndrome. I had never knew or heard about it. When I found out the sex of the twins(was told both were girls, but one girl and one boy), that's when everything started happening. THat was in November 2010. Every visit, was more and more bad news that my husband or I got from specialists. I knew that something was wrong when I had to start seeing specialists, but I didn't know what. I was having ultrasounds done that discovered the bowed legs, clubbed feet, and disproportioned kidneys. First it was Twin A with all the major issues, then after a littl ewhile, they started seeing things in Twin B, but at that time, nothing fatal. Mind you , I was due in April 2011. Well, I had to go into the hospital in February and ended up delivering them on the 23rd of February. Twin A (Chloe) passed 6hrs. later and Twin B (Chauncey) passed 2 weeks 3days later. Both had Antley Bixler Syndrome. The hospital staff at Duke Hospital honestly did all they could do. Had all these specialists come in to try to make my son better...but it was ultimately up to GOD. I know how you feel when you say that sometimes you feel alone....I still do a lot of my days. I think about my twins every single day and then it's certain holidays (just had bday & mother's day) that makes it 100 times worse. I do have to say that I have 2 healthy boys ages 10 and 3!!! And my 3 year old is very much a HAND FULL!! I think that it is truly amazing how this (genes/syndromes) comes rom us, the parents and then it's a 25% chance that it could happen again. THat terrified me...at first I wanted to try again but then I got scared; what if it happens again??
I say keep your head up and keep praying. Don't hold your feelings in....that's my main problem and now I am better at letting it out. I didn't think I could find someone who went thru this. I pray that GOD bless you and your family!

JoHanna - posted on 07/13/2009

My heart goes out to you. I have two boys now 13 and 15. My oldest son Chris was diagnosed with Anaplastic Medulloblastoma last year. We had a great pediatric surgeon who was able to remove the tumor, but because of the cell type of the tumor Chris had to undergo intense radiation and chemo. He finished treatment in Nov. but is still recovering. He has some permanent hearing loss in both ears, hates his hearing aides, and is in physical therapy to help with strength, balance, and walking. He is scared to start high school next month, since he has been out of school for a year and a half. It has been hard in trying to be there for both my kids. Thankyou for sharing your story. This last year has been very overwhelming for us. Is there any type of treatment for your daughter with her tumor besides hormone therapy? I think you guys have been wonderful with your little boy. I love that he is quick at grabbing things, he's a little mischeivious it sounds. It helps to have a chance to vent, of which I have had to do alot this year. I would love to talk or listen anytime you need to talk or vent. Thanks.