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Permalink Reply by Sharyn Thompson on July 19, 2008 at 2:37am

We recently had our third child, a much loved and wanted daughter. My husband and I are each one of four kids, and for this reason we always liked the idea of a big family. However, finances seemed to be less strained with only 2 kids so we decided to be selfish and stay with 2. DMD changed all that! When we found out about our son James, he was 2 and our other beautiful daughter was 1. We decided to have a third child for many reasons, some of them selfish but most of them not. Cord blood banking, more love in the family, each child always having someone to play with, Charlyse not being left on her own if James were to not live to adulthood, but most of all we just wanted another child to show the world, bring up to be a good person, and always be surrounded by love. We felt James also needed to be surrounded by as much love as possible.

We knew right from the start that people were going to judge us and our decision, as people so often do. So we didn't tell anyone at first. I had a CVS at 11 weeks and we had already decided if it was a boy we would see if he had the same mutation as James and, if so, terminate. Sounds so harsh, but the reality is we can't knowingly put another child through this. When we found out it was a girl, we didn't have to continue the rest of the DMD testing. We told everyone when I was almost halfway through my pregnancy, and we told them via email. This is what I wrote to them, and most people respected it.

"As many of you know Julian and I have been trying for another child since we found out about James and his DMD. Initially, after having our “perfect pair”, we were happy to stop at two. However, since James was diagnosed, our priorities have changed and we recognise the need to share our love with our family, and bring more love into this world. After 4 heartbreaking miscarriages in 8 months, I am now almost 19 weeks pregnant with a new baby.

I know some of you may harshly judge us and our decision, and wonder if we are doing the right thing, but we don’t really care for any negative opinions. If you have nothing nice to say, don't say anything at all. At this end of the day, this is about us and noone else. All we ask for is your love and support, as you have always shown us. We have thought long and hard about this, and realise James needs to be surrounded by as much love and support as possible to get him through what will probably be a compromised life. We also believe in the miracle of stem cell research and the benefits this may have on James in the future, hence why this baby's cord blood will be banked. I am not a carrier of this disease, but I still had a CVS at 11 weeks and everything came back normal. No genetic diseases, no Down’s Syndrome, no DMD. Baby #3 is due the beginning of March, 2008, and we do know the sex but we’re not telling this time!"

Having a third child was the best thing we ever did! James's face lights up when Saraya Grace is brought into the room, and Saraya seems to already have a special bond with him. It has been so wonderful that we are almost ready to go for a fouth, once this one is sleeping through the night.

At the end of the day, you do what you feel is best for you and your child/children. Don't worry about what other people say or do, and don't take it personally either. People say and do the silliest things sometimes, without thinking. Don't waste your precious energy reacting to what others think - you need to save your energy for the road ahead and use it on what is important - your family! And if people can't support you along the journey that you choose, then they shouldn't be taking this journey with you!

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Permalink Reply by BrodysMom on August 3, 2008 at 2:12pm

I too have had people make many comments about wanting more children. I have a 4 year old son, Brody, with DMD. A 1 year son, Bryce, who we conceived through PGD who was a triplet. We lost his brother through miscarriage and his sister passed away 4 hours after she was born from prematurity and a congenital diaphragmatic hernia (which you can't test for). We also miscarried boy/girl twins prior to my triplets. I so desperately want more children even after all the pain I have endured with losing my children. I too want a big family to share Brody's amazing love. I too want to have more siblings for Bryce in case Brody is not blessed by a cure. I too want to bank my cord blood. I personally have chosen PGD because I do not believe in abortion as a route to have more children free of DMD. I have also learned that does not ensure "healthy" children and that is okay. I would not give up the four hours I spent with my daughter for anything. I hope to get to have more children one day and I have just learned to really try and understand people's intentions not their words. I think most people are well intended and if they are not I know that they truly do not understand what we face on a day to day basis. You make the decisions that are right for you and those that love you will respect that and honor it even if it is over time.

Erica "Ric"

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Permalink Reply by Melanie Horton on August 19, 2008 at 12:58pm

This is a reply to irishgirl: We are looking into doing the microsort procedure. I am a DMD carrier and have been pregnant 4 times. I have one beautiful daughter who will turn 4 next week. We love her more than anything but want her to have a sibling. My three other pregnancies were all boys that would have had DMD. We terminated two of the pregnancies and the other one was a miscarriage at about 12 weeks. Deciding to terminate is the most difficult decision my husband and I had to make but having had a brother with DMD who died last April, we know how horrible it can be. I loved my brother but could not put my daughter or my sons through the anguish and heart-ache of this disease. So we are praying we can get the microsort procedure without breaking the bank like IVF/PGD would do. THe Virginia site no longer does microsort without IGF, only a facility in California does. I am currently filling out the paperwork for entering into the microsort program. Do you have any advice for me?

irishgirl said:

Hi Jessica: There are so many options open to you and having more children. My hubby and I are now hip deep in the Erickson method of tipping the scales to have a girl. As you probably know, it's when they "wash" the sperm to lower the "Ys" Then at 8 to 10 weeks into a pregnancy, a CVS is performed to determine whether it's a girl or boy and if there is MD present or anything else for that matter. It is a very non-invasive way of trying to have a girl. If I am a carrier and I have a girl, she will be a carrier, but I also know what is available to me now and how that will be so improved over the next 20 years, that I do not even worry about having a girl carrier. She will have Microsorting available as well as many other options. We really want another child and think it would be wonderful for our son with MD. There is Microsorting in addition to genetic doc's being able to pull out your eggs and tossing the MD ones away. I think your friend just doesn't know what's open to you. But you know better. A few of my friends had no idea of what's even available now. It's amazing what can be done. Go for it, talk to a genetic doctor, if you haven't already. You may just surprise yourself. I am really sorry for butting into your postings, but since I am going through this now, I wanted to share. Please let me know is there is anything I can help you with. I live right near the one and only Micro Sort office in Arlington, VA and that is such a cutting edge method. Noreen

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Permalink Reply by Linda Creel on August 19, 2008 at 4:50pm

A friend introduced me to this forum so I could learn more about DMD and find other grandparents out there who have a grandchild with DMD. I know from another experience (my youngest son was killed in a car accident at the age of 17) that people, even best friends say hurtful things. They want so desperately to help your hurt but they don't know what to say and sometimes they end up putting their foot in their mouth. Sometimes I found out that I just needed to tell them how I felt and then other times, I just let the comments go. It all depended on who said them.

My son and daughter-in-law are in the opposite situation, in that they do not want any more children. They do not want to take that chance. Some members of the families are very upset and feel they should have more children. I believe it's a decision they have to make, no one else. They are the ones who will live with their decision, not us, not other family members, and I believe we all need to support whatever decision they make.

I cannot imagine what you, as parents, go through traveling this journey you are on. I hope to learn more and to learn, too, what I should say and what I shouldn't say to our children. I love them so much and I want to be able to be as supportive as I can. Our grandson Andrew is such a sweetheart. He has the biggest blue eyes and the brightest smile and to me, he is an angel to both sides of the family. And already, he has made such a difference in all of our lives and has touched our hearts in ways unimaginable. What a gift he has and is to us.

Blessings to you,
Andrew's Mimi

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