August 1, 2019 at 7:36 pm #180033Hello and MD Gene testing/ family planning
I hope you don’t me asking you all for some advise but my research has recently started!
My husband lost his younger brother when he was 30 days old with muscular atrophy.
We are thinking about the future and a family but feel we may need to get some genetic testing done to see if he is a carrier and whether it would affect a child we had? There is no history in my family and I am not known carrier.
After the awful times my mother in law had to go through loosing baby at 30 days old I don’t know if I could do it.
I would be grateful for any advise about testing/ genes and if anyone has been in the same position.
Thanks appreciate any advice and help!
JohannaSmileyJoanna86ParticipantPosts: 0Joined: 01/08/2019August 5, 2019 at 1:45 pm #180074Reply To: Hello and MD Gene testing/ family planning
Hello and welcome to the forum Johanna. I can perhaps relate a similar tale but not the same one. My number two son was born quite normally, but as he grew it was noticed that he was very round shouldered, but sadly, we simply put it down to him “not standing up straight” as, even though working in medical FHSD was simply a set of letters to me then. eventually when he was around age fourteen, the problem had not rectified itself and he was having one or two other problems. I took him to see out paediatrician who, fortunately, identified immediately what the problem was. We were referred for genetic testing and the diagnosis was confirmed as was the diagnosis of myself being a carrier. The advice that they gave me that it would not affect me turned out to be misguided, but the genetic testing then and subsequently, turned out to be vital. We now knew what the problem was and could deal with it. There was, regrettably, some rancour because of it between myself and my now ex wife, but it enabled my son to move forward and build a good life for himself and take the decision that he would not have children of his own. I ultimately ended up as the father of five children. All of the rest were found to be clear of the condition, and that meant that they too could go on about their lives free of the concerns that their children when they came would have my health problems.
For myself the greatest regrets come from not being able have my parents and brother tested. Their respective family doctors stated quite categorically that they could not have the condition, despite never having heard of it before, and thus I could never trace the lineage of it. But it also highlights another point, not just how sometimes it is hard to get the information on genetics, but what you do with that information. I do not now, and never will ‘blame’ my parents for giving me the condition. thankfully I know enough about genetics not to do it and of course how would they have known. If you have the test to discover what the situation with you will be you are then going to have to face up to what comes next. My parents did not know, you will. You will have to make some very difficult decisions once if you discover that you pass on the relevant genes to your new child. Do you decide not to have children, just in case you did? Do you take the risk so that you can have a child of your own? In turn should a child be born with that condition, can you then deal with it? Many more other questions too. There was always a concern about “what if” for each of the subsequent children we had, but for all of my children I have been blessed. Whilst I would not have wanted them to have my condition, the one that did is not resentful, and uses it as his handle on the internet.
I am sorry that this is so long, but may I say simply to get the tests done and discover what the situation is. Only with information can you make the correct decision as to how to proceed. For me it was a vital part of mine and my children’s life.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015
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