Im the only one

[Hailey's Mommy]

Hello everyone I have not been on in a while because a lot of times I just do not know the words to say and I sometimes cry even coming to this site because then it is all real again and I can not act as if I am dreaming and this did not happen. So awhile back we found out that I am the only mother ever documented to carry the mutation in the sox9 gene that has not been affected. There has only been 2 other mothers in history (that have been tested) to carry the gene but they were affected in some way or shape. I do not know how to deal with this. So basically I am a miracle that was never supposed to be here. I should have passed with this gene when I was an infant. Now with that being said, they tell me there is a 50/50 chance that what happened to Hailey could happen again with our next child. Well if I am the first mother that has ever been documented to have this and not be affected How do they know this???? How do they know every child I have will not go through the same thing?? For the last month I have ran this through my head time and time again and I am still so shocked.. Why me? Why was I given this gene and I am living. The doctor told us they can do testing as early as 11 weeks to see if the baby has campomelic(if they carry the gene) well how do they know that the baby does not just carry the gene like me.. I am fine never been sick with anything other than a common cold. I am so confused and feel like this is all my fault. Yeah I could have never known but still maybe we should not have found out. Maybe things would be easier if I just did not know. I want my own babies, i want that more than anything in this world. I am ready, I was ready. I miss her so much and now going back and looking at the pictures you can see she was soo sick and I did not see it. Why didn't anyone make me see? Why did I not see that she was in so much pain? Why did I keep telling myself she was coming home? Why did I not listen to the doctors? The geneticist told us that they can do Artifical Insemination (SP?) and actually take my eggs and test them to find out which ones carry the gene and which ones do not which I thought was very cool. The only problem is it is around 10-20 grand and then that is not even guaranteed. Ok I just needed to vent because I just am overwhelmed and do not know how to let all of this sink in. I will never have a normal pregnancy and the first 11 to 14 weeks will always be a living H*ll., just that feeling or knowing that there is a 50/50 chance it will not be ok. So anyways thank you for listening again!!!

[Estrella]

My thoughts and Prayers are with you. Sending you a great big Hug!:)

[Bill Tilton]

Wow — that is a tough set of circumstances. I'm so sorry.

I wish I had a magic answer, but I don't. The best I can offer are a few thoughts on what you've said. First there is this probability of being free of the mutation. Since this is a medical/genetic prediction, I think the question of "how do they know?" should be discussed with your doctors (or a specialist, if needed.) Get a second opinion if that makes sense. I do think there is a great deal known about genetic mutations and how likely they are to be passed on. Since there is basically NO data on the chance of surviving WITH the mutation, I think I would ignore that slight additional possibility. As you say, you are the only recorded case. Unfortunately, that leaves you three very unpleasant choices:
1. Choose not to try again
2. Try again and go through **** for the first 14 weeks
3. Pay big money for selecting the "right" egg to increase the chances of success (but not being totally sure even then.)

I don't like any of those choices and I can certainly understand that you don't either.

My other concern is that you are looking back at the "should have, would have, could have" possibilities after the attempt is already over. This is an ideal way to beat yourself up with guilt, but it never changes the outcome. As far as I know, none of us think you are guilty — only you. You HAVE to find a way to stop the guilt trip — professional counseling, if necessary. I am excluding the possibility of real medical malpractice by your professional team — that would be a whole different issue. Otherwise, the best you can do is take the information you have learned to make the best decision for the future.

Are there support groups for women who can't have children? While you are in a slightly different category of "possible but risky", I would think many issues are the same.

Hugs,

Bill

[Cheryl Haggard]

Haileys Mommy,



So basically I am a miracle that was never supposed to be here. I should have passed with this gene when I was an infant. Now with that being said, they tell me there is a 50/50 chance that what happened to Hailey could happen again with our next child.


I believe in Miracles.
Educate yourselves all you can with this condition. Talk to your doctors. Decide what is best for you, and don't look back. Even if you should try again for another baby, 50/50 chances for a healthy baby (in my opinion) are pretty good odds. I'd take it.

With Maddux, when we went in for genetic counceling about 5 months after he died, and we were positive of his condition, I left that office with a 99% chance that I was a carrier for his condition. (Myotubular Myopathy) ((MM1)) And near an 80% chance that my two daughters would be carriers for their male children. He was born with the most severe form of MM1. I also have a 13 year old son that is perfectly healthy.

Well after all the testing, I am NOT a carrier. Which leaves my daughters to carry less than a 3% risk of being a carrier. The same as me. How and why did this happen? Just the luck of the draw. Doesn't seem fair, but there is nothing I can do about it.

Remember that the lifetime we have to live without our babies, is going to seem very short, compared to spending eternity with them.

My thoughts and prayers are with you for peace, healing and hope...
Cheryl

[Hailey and Logans Daddy]

We will make it throught this. Whatever needs to be done I will be by your side for everything. Miracles do happen and we deserve one by now. Dont hold your head dpown yet we still do not know. Until they can 100% assure us we can not have healthy babies there is still hope. I know its hard but we will make it through this and we will have more additions to our already beautiful family.

[carissa13]

I feel so bad for you, that is such a hard place to be. I do have to say, don't blame yourself, it is not your fault! I heard you say, you are the miracle, sometimes we have to find peace in the things that hurt us most. It's only medicine, nothing is concrete in medicine. And since there is so little medical background how do they really know?

The doctors don't "know" forsure what happened to my son but believe it may be something that is carried between me and my boyfriend. I'm terrified to have genetic testing done because then if it is something in us I will have to deal with that reality. But in the same breath I need to know.

Hang in there, 50/50 is still pretty good. People don't understand how slim their odds are of having a healthy child and it happens every day. Look to God, he will put the answer on your heart and you will know what to do.

[Lyssa Sauer]

I too know the feeling of why did I ever even ask? Sometimes the answers we get arent the answers we are looking for. I still struggle with this too. Dont blame yourself she was given to you for a reason believe that God has a plan for you and in the end your whole family will reunite and be as one for eternity. My thoughts and prayers are with you to find a little peace and maybe even some answers that seem to fit better. Lyssa

[tinantravis]

We will make it throught this. Whatever needs to be done I will be by your side for everything. Miracles do happen and we deserve one by now. Dont hold your head dpown yet we still do not know. Until they can 100% assure us we can not have healthy babies there is still hope. I know its hard but we will make it through this and we will have more additions to our already beautiful family.

Beautiful...you are so lucky to have him by your side. Amazing.

I agree with what others have said and I do believe you can beat the odds. Our odds weren't as concrete as yours...we've lost two babies to chromosomal defects and both have been described as "flukes" and are unexplainable. We struggled with whether or not we should try again, have insemination like you talked about, or just count the blessings we have. We don't know what the future holds, but we can't give up hope. Your husband is right...miracles do happen and you'll get your chance, no matter what the circumstance. I know it's hard to imagine right now, but she's there...waiting for you...she's your miracle...Her name is Hailey.

Take Care,
Tina