Thursday, October 23, 2008

Having more children after one is diagnoised with a bleeding disorder

I wanted to start this new blog after 2 Year Olds Mommy posted a comment. She will soon be having her second child and is wondering how others felt when they were in her shoes.

I have 3 sons all of who have severe hemophilia A. After our first son was born it did take a little bit for us to come to terms with everything that comes with a diagnoises of a bleeding disorder. We had no family history so I was lost! Each time I did go through some of the same feelings and fears. However I would have to say with each birth it was easier! I had a better understanding of hemophilia and how to handle it. I had found out before birth that my second and third sons had hemophilia. By the time I was waiting for the results of our third son I'd have to say I was more worried he did not have hemophilia. I did not want anything to be wrong with my child but hemophilia was now a norm in our family. I was worried I would not know how to parent a child that did not have hemophilia.

You have over a year under your belt with your sons diagnoises. Remember you have learned a lot! The biggest advise I can give you is to enjoy your new baby! Everything will fall into place for you and your family! We are always here for you support you and to celebrate with you! Please keep us posted on your delivery!

Best of luck to you!


sarasarasara said...

Lori, I was just thinking about this yesterday. My youngest son is a moderate hemo and we have no family history. I am hesitant to even think about getting pregnant again for fear of my next child having it. However, my oldest son does not have it. So I think that perhaps the mutation was with him and not in me.

Do you know where the mutation in your family started?

Lori said...

I found out from genetic testing that the mutation was with me. Have you had any genetic testing? Your HTC would be a great place for you to go if you are looking for some help with the genetics.

As a mom I know how hard it is to think there may be something wrong with any of your children (current or future). I am so grateful for all the advances that have been made in hemophilia! When my oldest was born things were so difffernt! When I was struggling with having more children I was speaking with one of our HTC nurses. I was already pregnant with our second son and had just found out that he would also have hemophilia. I was struggling with the thought that I was selfish for wanting another child that it was unfair for my unborn son with hemophilia. She said something to me that will stay with me forever! She told me to ask my oldest, who was 10 at the time, if he would rather be alive with hemophilia or never to have been born. I did ask him and he told me of course he would choose to be alive because it just wasn't that big of a deal. He actually was thinking of all the things that have happened in his life that would not have happened if he did not have hemophilia. The people he has met. The meetings he has been able to attend. The people that he has been able to make a differance in their life and the ones that have made a difference in his.

Deciding to have another child is a very personal decision! I know for me hemophilia was something I knew was controlable. My husband and I chose to not let hemophilia decide how many more children we had. In our house hemophilia has a seat in the back. Sometimes it tries to ride in front but with a little guidance it returns to the back. I look in my sons faces everyday greatful for who they are! Hemophilia is part of who they are...not what they are! I can not imagine not having them in my life!

Every family needs to make the the decision that is right for them. I do not think differently of those who choose not to have any more children because of hemophila nor do I think any differently about those who choose to have more.

I would incourage you to seek out your HTC to help with your genetic questions. I know you will make the right choice for you and your family!

Mom of 4 said...

I also want to comment about having more children. My first baby was my son with severe hemophilia. We had no family history so it was all a shock to us. When I found out I was a carrier we decided not to have anymore children out of fear of the diagnosis...we were not only new parents at the time, but we were new to hemophilia too. And we were scared to death. We wanted a large family so this decision was agonizing for me. Then during the difficult month we had when our son was 8 months old...(he was in the hospital for nearly a month and was diagnosed with an inhibitor as well)...but shortly after that time I found out we were expecting our second child. Excited but scared we realized that God had divinely appointed us to have more children. We then opened our hearts and minds once again to our dream of a large family. And I am so very thankful we did. We actually wanted more boys so our son could have the brother he still begs us for today...but we were blessed instead with 3 girls. Only one of which is an affected carrier. I can't imagine life without anyone of them.

I wholeheartedly agree with Lori that having more children is a very personal decision and one you need to make for yourself.