Wednesday, December 29, 2010

For Seamus

One day, Seamus is going to find out the circumstances of his brother's origins and I wanted to write down the story to help him understand.

When you have a child with Cystic Fibrosis, deciding whether to have more children is a difficult decision with much to take into consideration. We did not make this decision lightly.

My childhood was full of moments that I couldn't imagine getting through without my brother being by my side and I know James feels the same way about his siblings. We always wanted Seamus to experience that too. He is definitely in for a bumpy road ahead and there is nothing like the love of a brother or sister.

But we also knew the risks. The chances of having another child with CF was 25% which may not seem like a lot to some people but it's huge when you are looking at your child suffer in the hospital and have to watch him go through all the daily stuff he has to endure just to try to stay healthy.

Another CF mom I know put it well when she said "Women take all kinds of precautions like not eating soft cheeses or raw fish when the chances of that causing a problem are so small. Why would I take the much bigger chance of giving another child a horrible disease like CF?"

If we had another child who did have CF, I can't imagine the guilt I would feel. Not only for bringing the child into the world knowing how much he would suffer, but also knowing I would be affecting Seamus' health as well. The recommendation is that people with CF should not be within 3 feet of each other because of cross contamination but obviously CF children in the same family can not adhere to that. Whenever one grew something in their lungs, they would be sure to give it to the other.

There is one way for two carrier parents to have a child and insure (at least 95%) that they will have not the disease, and after many years of deliberation, that is what we decided to do. It's called Pre-Genetic Diagnosis (PGD) which is used with in vitro fertilization. They can tell as early as 3 days whether an embroyo carries the genes for CF.

It's a very touchy subject in the CF community because people have many opinions about it. Some think we should leave it up to God who does or does not get the disease or they think a cure is going to be found soon, so if another child has it, they will be fine. Some people who have CF feel that if their parents had used PGD they would never have been born and maybe it makes them feel like the world is telling them they shouldn't exist.

I want Seamus to know that is not how we feel at all. We would never, ever change anything about you. You are a kind and compassionate little boy and we know part of that comes from your experiences with CF. We desperately hope for a cure, but with or without one, CF will always be a part of the wonderful person you are.

I hope you can understand why we made the choices we did for your baby brother. We wanted to protect both of you. You are going to be a fantastic big brother and he is going to love you so much, just like Mommy and Daddy.

In no way did I write this post in judgment of other CF parents who may have made a different decision than ours. There is no easy answer and I respect any parents who have to deal with these issues. I ask that you respect our decision as well.


Riverdale Park Farmers Market said...

To my wonderful, smart, engaging, and utterly fantastic kid, I love you exactly the way you are and I wouldn't change one tiny little thing about you. Seamus, you are just about the best kid that I ever could have had. I love you with all my heart. To your mommy, I love the way you express yourself for all the world to see and am very proud of how you care for me and raise our son. I'm sure you're gonna be
great with little Mackey also.

Anonymous said...

I think I may have been the CF mom that you quoted that talked about taking the risk. Kudos to you for making a very difficult decision. We also have a healthy 3 year old brother for Aidan thanks to IVF/PGD. It was the best decision we could have made for our family and for keeping Aidan his healthiest!

Anonymous said...

Really happy for you. I am mum to boy with CF. Our boys are adopted so we didn't have to make that incredibly hard decision that you have made - but I have to say that having a little brother has been such a brilliant thing for our boy. They are 7 and 4 now and such good friends. We worried at first that both would miss out - but it is so good to see them together, and I can see that they will be such great support for each other in the years to come.


Anonymous said...

What words..

Chris said...

Jules, this is the first time I've read this post. It touched me so much. You are such a wonderful mother, sister and friend.