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Permalink Reply by Ofelia Marin on July 2, 2008 at 1:04pm

Hi Jessica,

I am in exactly the same situation. Robert is our first child. He is 9 month old. We always wanted to have 2 or 3 children and Robert seems so happy when he is around other children… I did hear similar comments from my friends even though they know that I am not a carrier, so in theory I could have unaffected children (of course there is a real possibility that I am a germline carrier and I know that too well!).

Well, I could say that since I heard those comments form my “good” friends, we do not keep contact as often as before and to my surprise people whom I did not consider friends before were very supportive during these hard times. That makes you wonder about friendships…

Ofelia

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Permalink Reply by MicahsDaddy on July 2, 2008 at 2:56pm

Good friends say things without thinking because they are comfortable with you. If they weren't good friends, they would pay attention to what they are going to say before they say it. I can say what ever I want to my best friend and vice versa.

It's just that we are sensative to a particular area (DMD) since being introduced to it. So, I try not to get upset at a friend who says something and explain to them how to be careful when saying something that has to do with kids. It's the only area I expect close friends to think before they speak.

And, if they don't think, I let them know.

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Permalink Reply by Jessica Rownd on July 2, 2008 at 3:15pm

Thanks so much for the input. I guess sometimes I need to speak up more even to my friends. I guess it comes so much harder when it is about our children.

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Permalink Reply by Julie Gilmore on July 2, 2008 at 9:29pm

Hi Jessica,

Also remember that your friend, whilst wording it really badly may have also have been worried about you, and the fact that she understands you already have so much to deal with.... so its not that she is a bad friend or uncaring, she is there for you, thinking of your needs as you care for Wyatt - and friends like that are hard to find.

If you and your husband want more children then go for it! Your son is still young enough that you don't have to deal with his loss of ambulation whilst trying to breastfeed or cope with the demands of a toddler.

This disease takes so many decisions out of parents hands, and the ones they do make are tough ones. Don't let this disease leave you regretting that you didn't give Wyatt a sibling - and don't let anyone decide how much you can handle - that is a decision that is between you and your husband.

(And I am certain that all the mums on this forum would love to have a new baby to "cluck" over - so I look forward to hearing the news!)

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Permalink Reply by Michelle LB on July 2, 2008 at 9:47pm

Girl you do what you want to. I don't know your particular situation with your friend, but no matter how much you tell someone about MD, sometimes they just don't get it. If in your heart you believe that another child would be best for your family, you should do everything in your power to make that happen. Only you know what you could handle, and like Julie said maybe your friend is just worried about you and Wyatt. In my case, I have two boys, my oldest,5, has DMD, and my youngest, 22 months does not, and I am a carrier. And, I so desperately want a little girl! Only time and finances will tell.

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Permalink Reply by Lee Ann Faeth on July 3, 2008 at 12:41am

Jessica,

I feel for you because I was in a similar position just last year. My son Avery was diagnosed on Valentine's Day 2007 and just 2 weeks before, I found out I was pregnant with my second child. Prior to his diagnosis, my husband and I had been trying to have a baby, but stopped trying when we learned that DMD was suspected. Evidentally, we didn't stop trying hard enough and I am SOOOO thankful that my son now has a beautiful little sister to love and grow up with.

I heard several negative comments from both friends and family when we first announced that we were expecting our second child, but although my heart was aching terrribly, I knew that Avery would be much better off having a sibling to go through this journey with. Although there was no family history, I was also concerned about having another boy and mulled over having a CVS test done early, but opted to wait until 16 weeks to have an amnio, because to me, it the gender didn't matter regardless of possible DMD.

Ultimately, only you and your husband know what the right choices are for your family. Initially I was hurt by friends and family members reactions when we announced my pregnancy, but later on I came to realize that it genuinely was out of concern because as they all love our son dearly, they were also hurting as the diagnosis was so fresh.

Our daughter has brought so much needed joy to our family and although I know that she is going to also have alot to deal with as Avery gets older, the love I see in his eyes for her confirms to me that he needed a sibling to go through this journey with.

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Permalink Reply by Colin McKenzie on July 3, 2008 at 4:09am

Dear Jessica

All you need to do is follow your heart, believe and ignore any comments that are made from people who do not actually know how we feel as parents. We have seen the demise of what we would have classified as our best friends, we have also seen the strengthening of those who were just around, who now are the pillar of strength in our lives and for me, the consolidation of my best friend and partners relationship, my wife, she is amazing and I love here more each day, a gift given to us through the birth of our sons who have given us reason to live. We have two sons with DMD, a daughter and I am proud to say another son on the way. We debated this long and hard for many months and for various reasons. One of these was the reality that Little Jessie (our daughter) would grow up and by the time she is 25 years old, possibly have buried her entire family, Suzanne and I both have a strong relationship with our siblings and they give us love and support against all odds, they never judge and will protect us like we will them no matter what. Jessie would loose all this and have had a very complex childhood as well.

So now the question, how did we go about having the courage, stupidity, and recklessness, call it what you may to have this child. We eventually agreed that we would do the prudent thing in society and have this pregnancy, God willing with the understanding that we would do a CVS at 11 weeks and should it be a DMD boy, terminate this pregnancy. Well Suzanne finally fell pregnant, usually it is a great occasion, but we felt absolutely lost in emotion. It was possibly the most difficult time in our lives together. It went against everything we believe in, however we tried to assure ourselves that it was the right thing to do for the sake of society. I also believe throughout this whole process, we were given many signs to guide us to making the correct decision. A few are as follows, Suzanne’s Gynecologist worked out that the baby would be due around the 30 of December, a time she always is away on summer holidays, this year she would be in town to assist with the birth, she would be out of town when the results of the CVS would be available and would not be in a position to personally do the termination, she is the only one Suzanne trusts and this created more stress. It turns out to be a son, another blow for Suzanne, as a daughter would not be terminated due to the unlikelihood of not being a sufferer. The list goes on and on. My sister in law and I had a feeling/vision that this child would be healthy little boy, BUT society expected proof. I was about to tell the CVS doctor to get lost as the planned Doctor could not make it and her partner stepped in, another sigh, he had a malfunction of the first sample when he let the syringe slip off the needle and could not continue, he then needed to insert a second needle. This again caused me great anger, as he had just doubled the potential miscarriage statistics of our child, all I could imagine was loosing a perfect child as a result of this test.

The first results were released, a boy with no Chromosomal 13, 18 and 21 abnormalities. It then reached absolute emotional turmoil, I then found Tanya Flemming on the DMD community that same day, I worked out that it was almost impossible for her to have her youngest son without knowing about the status of her eldest. I also noted that she has a family mirrored in both sex and naming of her children like ours. She also has 4 DMD affected children. Tanya was the final light for us in this whole saga. Suzanne and I lay in bed and we traced all the things and signs and evaluated our lives, that evening we decided that we are not going to terminate this child, period. It was Gods gift and child and He would not allow us anything He believed we could not deal with, He would also look after all his children and especially the “lost sheep”. The one question Tanya asks, “Look at your family, are they happy? They seem happy to me from what I see on the pictures!”

Furthermore the whole Genetic council rules and ethics and nonsense (I have a stronger version of the word nonsense), it is a requirement that a medical person along with a counselor tell us the news. Are they totally out of their minds of understanding, we fully understand the consequence of DMD. We made this decision with our eyes wide open. We possibly know more about this condition through PPMD and research, what more could they possibly tell us. The only person my wife trusts with her emotional state is her personal psychologist; she is not medically trained and hence is unqualified to tell us. What a lot of ****. The problem was that the Gynecologist was going to be on leave at the time of the results, but again she made arrangements to be contacted on her mobile to receive the medical results so she could phone us to tell us. By this time we actually didn’t care about the results, either way we were having this son and were very disappointed in ourselves that we had further risked loosing this special gift by doing all these tests on him. We were having this son and should he be DMD, we would have had two for our lives, how much more love do we need to love and care for another special boy.

Well the results did come through, the day (27 June 2008) before Suzanne turned 41. It was the best birthday present any mother could wish for. It is confirmed that this little boy (John Luke) is free from the DMD gene, he will hopefully grow up to be a pillar of strength and together with his sister, live long enough to change as many DMD families opinions, and take their burden and give them hope, like we have had from PPMD. My personal hope and prayer is that they along with their brothers live long enough to see the end of DMD as we know it today. For this, I am eternally grateful that Pat Furlong, has the energy and vision to continue the fight against DMD. She gave her sons so we could benefit sounds so similar to another version of the same story. We are fortunate to be living in these times.

My advice, having been through this, follow your heart, ignore the opinions of society and any one else who is “unfortunate” to never know the love these children bring into our lives. Ask God for his blessing and he will grant you this.

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Permalink Reply by Linda on July 3, 2008 at 10:17am

Amazing post Colin. Wow. I have three children, two with DMD, and I don't know if I am a carrier..going to get tested but more than likely I am. My husband is actually children's stepfather and doesn't have any children of his own. He loves my children and treats them as his own and claims them as children, not stepchildren but we've talked about having a baby. I would love to give him his first child, but for obvious reason, all we're doing is talking. My concern was the same, we have a daughter and I know in the end, she will be alone and I just can't bear the thought. I have 8 brothers and sisters so I've been blessed to have a large family to lean on when I need to. So, for me, leaving Adrienne alone, is heartbreaking.

Jessica, I know what you mean and I have found people are always going to say something stupid or insensitive when it comes to DMD. For instance, I've also discussed with my best friend about Chad and I thinking of having another baby and she said "girl, you don't need another baby". Of course, she was just "looking out" for me but it still hurt my feelings and made me angry. She's pregnant now and never wastes an opportunity to show me her growing belly or make me touch her belly to feel a kick, or send me a pic of the ultrasound..now I know, she's excited, this will be her second and as a best friend she would want to do and show all those things with me but deep inside it hurts. I have a minivan that I have a ramp on and I know that I'm going to need a fullsize van to accomodate both boys..and financially we just can't afford it right now...and my best friend knows that. She just bought a brand new van for her soon to be family of four...her healthy family of 4...and of course she was so excited and when I called she went on and on about her brand new van all the cool features..and I found myself unable to share in her excitement. Crappy of me, I know but I just couldn't help it. My sister and my Aunt, both have made the comment of "He's not heavy" when they lifted my 10 year old whose wheelchair bound. One time...they lifted him ONE time. I very nearly pummeled them....I've been having back problems and huff and puff after I lift him...and so for them to say that...it just infuriated me. I told them, sure he's not heavy if you have to lift him ONCE. Try lifting him every single day in a non handicapped accessible home and then you let me know if he's heavy or not!

So yeah, people can say and so some insensitive things and I try to tell myself to relax...people don't realize what they say and I don't think my best friend and sister and aunt ever intended to hurt me but still...my relationship with my best friend is beginning to become very strained. You will find that there are people who will talk about being there for you and then there are people who ARE there for you and learning the difference between those people can be very painful but just know that at least you can count on everyone on this website. We know it, We live it, and We are there for each other!

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Permalink Reply by Terry Porcaro on July 3, 2008 at 1:36pm

I'm not familiar with the CVS test. Could someone explain it? Terry (Grandmother of two little DMD boys)

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Permalink Reply by Colin McKenzie on July 3, 2008 at 2:03pm

CVS is a simular test to Amnio, it happens a lot earlier, at 11 weeks, it collects tissue of the placenta and this is used for testing. Risk is 1:200 of miscarrage, or so they quote the statistic. The full name is Chorionic Villus Sampling, there is a youtube video of it at http://www.youtube.com/watch?v=0XUZsvTkEnw

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Permalink Reply by Jessica Rownd on July 3, 2008 at 2:05pm

CVS testing is short for chorionic (sp?) villus sampling. It is a way to do DNA testing to see if there is a mutation while in the womb. You can look up more info on google. I hope this helps.

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Permalink Reply by Terry Porcaro on July 3, 2008 at 2:19pm

Thanks for enlightening me about the CVS test Colin. I appreciate it. Terry

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