Hellobee Boards

I have a good friend here whose son has DS, and when a college friend shared her son's prenatal diagnoses, I asked my friend for ideas about support. This is what she sent me:

I don't have first-hand experience with Down syndrome, but my 4 year old son has a different genetic disorder. He has significant developmental delays, low muscle tone, and as yet TBD cognitive abilities. He is also the sweetest boy I've ever met (really! He always gives me the last bite of his dessert!), and he's made our lives immeasurably richer by being here with us. I would be so sad not to know him. I don't mean to sugarcoat the challenges, especially since we don't know if he'll ever live independently. But I can say unequivocally that he is worth every bit of heartache and struggle we've had to endure. This life with him is hard but so good.

Coincidentally it was just World Down Syndrome Day, so there's a lot of info floating around Facebook right now. Might be worth a look!

I might be wrong about this, but from what I remember children with the mosaic version of genetic changes generally aren't as severely affected. One of the most helpful things after my son's diagnoses was joining Facebook groups and talking to other parents dealing with the same thing. I would look for DS and mosaic DS groups and ask questions there. They'll have the real-life, boots on the ground answers for you.

Finally - I'll be thinking of you in the days ahead. It's the hardest thing to hear news like this about your child, especially before you really "know" them. But once they're born, they become so much more than their diagnosis. Peace to you mama

This is the video I was thinking of that was made for Down Syndrome Day today, by the way

Dont have personal experience or anything to add specifically about the mosaic diagnosis, but I would recommend this blog, she has an older daughter with CP and a 6ish y/o son with Downs. She talks honestly about some of the struggles they face but also is a good look into normalcy (he attends school, plays t ball, etc) http://www.bringingthesunshine.com

Best wishes, mama.

First, just know that whatever decision you make we are here to support you.

There have been users who terminated for medical reasons. I can think of one who didnso after a Down’s syndrome diagnosis. Hopefully they will chime in so you get a wide range of advice and experiences.

My good friend’s eldest child has Down syndrome. She is 5 now and is thriving. She’ll be going to kindergarten in the fall. My friend did not know until she was born. This was 6 years ago and the NIPT wasn’t offered much then. I don’t know how the doctors missed it during her ultrasounds. When her daughter was born she had to be taken by air to a hospital with a higher level NICU. That was very traumatic for my friend. Then she had open heart surgery at 3 months old. She had an additional surgery as a toddler. She’s been in OT and speech therapy since she was very little. When she first learned to walk she needed ankle braces. Their family hits their insurance out of pocket max every year. She’s a little delayed still in speech and motor skills, but not much. My friend is very proactive at getting her daughter the help she needs. She’s gets a lot of support from the local chapter the Down syndrome association.

Just wanted to say, like others, whatever decision you make we are here to support you.

I see you're in NY, not sure where but I'm gonna wall you

I'm so sorry for the stress of this situation and that you are faced with additional testing and extremely difficult decisions. Whatever you decide to do, I support you fully.

There are a few women here who have terminated for medical reasons, including me. We terminated the very much wanted pregnancy of our third son due to a severe open neural tube defect. Like you, we found out late in our pregnancy, also at 17.5 weeks. After second opinions, meeting with a geneticist, and a lot of soul searching, we knew that we couldn't continue the pregnancy. If our son had lived, he would have had multiple surgeries as a newborn, would have been permanently brain shunted, would not have been able to walk, void, would have had little to no sexual function, and would have had permanent brain damage. He would have had a very poor quality of life, and we knew that we didn't want that for him, or for our other living children. It was an incredibly difficult and traumatizing decision, but almost 2 years later, it is one that I have not regretted. I still think about my son every single day and cry for him still at times. But I know in my heart that it was the only decision for my family. There are a few here who have terminated for T21 and were vocal about it. I will try to dig up those old threads. I am happy to talk to you about my experience, but please know you are not alone.

You might find this story helpful, too

http://boards.hellobee.com/topic/a-cmv-loss-story#post-2717132

@LabradorLover: This is an incredibly difficult situation, and I am so sorry you find yourselves in it. I have no judgement or opinion or thoughts about the unbearable decisions you are tasked with. I'm just thinking you and how painful this must be, and I'm so sorry.

One of our closest couple friends have a daughter with Down Syndrome just a few months younger than LO, they're now both 3. My friend found out just about the same time you did in your pregnancy, and she found talking to parents of other children with Down Syndrome and pregnancy/infancy resources incredibly helpful while she was pregnant. They've become very active in the DS advocacy community so I reached out to her for recommendations for you (you're not in MA, right? I have loads if resources if so). She highly recommended the Facebook group Down Syndrome Diagnosis Network and downsyndromepregnancy.org as places to get honest and real feedback and support in navigating the world of pregnancy and parenting a child with Down Syndrome.

I wish you peace in this incredibly complex situation.

I'm so sorry you're going through this. I am due a week after you (5 sept). We found out 2 weeks ago that our baby likely has either trisomy 13 or 18. My Dr has told me that it looks as though our baby has "unsurviveable" health issues. I am going for an amnio next week to confirm a diagnosis. My husband and I think we will end the pregnancy, and induce labour and birth. For many reasons. I'm happy to chat more as we travel this path together. Nice to know that we are not alone in this awful decision and journey.

I also want to recommend Kelly Hampton. My children don't have special needs, but I have been reading her site for years and feel inspired by her honesty and positive outlook.

Being faced with a prenatal diagnosis of varying complexity and severity is so hard. @winniebee posted my story above-I terminated for CMV last year. I just want to offer my support however you decide to proceed. There is no right or wrong choice and I hope you get the love and support you need as you figure out your path. I know the community here will support you no matter what, as they did me in my grief. I’m not on the boards much these days, but feel free to wall me if I can be of any help at all.

@LabradorLover: I'm sorry that you're going through this. My younger brother has DS, so if you have any specific questions please feel free to PM me and I'll do my best to answer them. Thinking of you

@LabradorLover: sending you so many good wishes for the scan!

@LabradorLover: sending you all the good vibes!

Thinking of you!

@LabradorLover: Thinking about you! Know that no matter the outcome we are here to support you.