I got my amniocentesis results

[boymomof2]

My baby boy has down syndrome, Trisomy 21. I was trying to prepare for this but hearing it still felt like a sucker punch to the gut. They won’t know severity until he’s here. I have to go for an echocardiogram with a pediatric cardiologist soon because they have higher risk of heart defects.

Any suggestions on how to better prepare my boys 11 and 6 for this?

[aprilsails]

I’m sorry for the results and I hope everything goes well with the echocardiogram.

In terms of preparing your kids I have no real suggestions other than honesty. I have a friend with a down’s child and his development was pretty close to normal through his first year. He walked late, but not hugely out of range. I think the hard discussions will come later, and may or may not be so hard based on your child’s abilities.

[clseale]

I’m so sorry. I don’t have any advice, but I knew you were awaiting results and didn’t want to read and not respond. So much love to you and your family as you navigate this.

[landmermaid]

I wish I had advice. This must be incredibly difficult to process. I'm very sorry. Please go easy on yourself. I hope the echocardiogram goes well. Lots of love headed your way.

[icedcoffee]

I’m sorry. I don’t have any advice. Just hugs.

[pickel]

I am so sorry. My best friend from high school has a little girl with Down Syndrome. At the time she was born, she also had two older girls (and now has a younger son) The hardest part for her has been the medical issues her little girl has had, but the older two love their little sister so much. I know my friend had a lot of worries in the beginning of what the diagnosis would mean for her family as well as long term what it would mean for her, like would her daughter need full time care for the rest of her life. My friend went through a pretty hard grieving process; whatever you are feeling is normal and ok. We’re here for you.

[sunflower17]

Sending hugs. However you’re feeling is ok.

[miamigirl]

I’m really sorry. I don’t have any advice.

[Yankees21]

So many hugs. This is a lot for you to process; I’m so sorry. I hope everything goes well with the echocardiogram.

I know my five year old loves videos- maybe you could show your kids some videos with kids/adults with Down Syndrome to get a little better idea of what it means?

[pasdechat]

I have an 18 month old DD with T21 also diagnosed through amnio.

Check out downsyndromepregnancy.org. They have a short book called from “Diagnosis to Delviery” that covers a ton of info about T21 and how to tell people/how to respond to questions. I read it multiple times while we were waiting for DD’s arrival. Super helpful.

Also check out the Down Syndrome Diagnosis Network. They have a HUGE network and various social groups offering advice and support. I’m on BMB and it is the best group of internet strangers I could have possibly connected with.

Gigi’s Playhouse is a support organization for individuals with DS and their families. They have locations all over the country. If there’s not one near you chances are good there’s a support organization near where you live. They will be able to help guide you through it all.

It’s a lot to process, and you’ll go through your own grieving process. Just know whatever you feel is normal. You’re going to get bombarded by list of the all the possible things that could ever go wrong. But know that out of that long list of potential issues you’ll be hard pressed to find someone with T21 who has even half of those things. Some kids are more medically fragile than others, but in the end you parent the child you have and do what you can for them just like you would with any kid regardless of the number of chromosomes they have.

Feel free to PM me anytime if you have questions or anything. I’m happy to share my experience or listen if you need to vent, cry, etc.

[chocolatepie]

I am so sorry. Much love to you as you navigate next steps and hard conversations.

[boymomof2]

Thank you everyone. I’m still processing everything. They threw a long list of what to prepare for but we really won’t know a whole lot until he is here. I’m type A planner so gray areas and unknowns are not easy for me to deal with.

[G22]

Many hugs as you move forward!

[stellelinds25]

Sending you lots of love and hugs...I don't have any real advice about how to tell your kids other than to maybe see if there are any age appropriate books to explain/help them understand what it is and what it means?

[robinsbff]

i don't have any specific advice, but the videos and books mentioned above seem like good ideas to me. sending you a lot of hugs and keeping you in my thoughts as you continue to process this.

[WinterWine]

I am so sorry to hear this. While I don’t have much advice, I am certainly thinking if you as you process this news.

[farfalla2011]

Sending you lots of hugs, positive thoughts and prayers. I'm so sorry about the results. I don't have any personal advice, but I like the idea of approaching it as honestly as possible with your other 2 kids.

You can do this! Also, I would try to find a local support groups in your area to help walk through this new chapter of your life.

[woowoo]

boymomof2, I just wanted to send hugs. I have two acquaintances that have little sisters with Down Syndrome and their families are both incredibly close and loving. Both families are involved with Gigi's Playhouse as well.

You sound like a great Mom and you'll do an amazing job navigating through this. Make sure you take time to take care of yourself both before and after he is born.

[clseale]

Jun 5, 2019 6:19:06 GMT -5 boymomof2 said:

Thank you everyone. I’m still processing everything. They threw a long list of what to prepare for but we really won’t know a whole lot until he is here. I’m type A planner so gray areas and unknowns are not easy for me to deal with.

I’m so sorry. I know our situations are not the same, but when receiving our diagnosis and awaiting more information, the potential gray area was my biggest fear. I remember telling DH (after the appt with the specialist) that as gut wrenching as our appointment had been, I was thankful for how black & white things were. Be gentle with yourself. This is a lot it process now & moving forward. I hope you are able to get more answers soon. Thinking of you and your family.

[red]

I am so sorry, I have no personal experience or advice, but sending strength to you and your family.

[latte]

I don’t have any advice, but wanted to send hugs and love your way.

[boymomof2]

clseale, I'm so sorry for how your situation turned out. After giving me the diagnosis they hit me with all the things he's now at risk for. I have to go see a pediatric cardiologist next for an echo-cardiogram to see if there are any know heart defects associated with this. I see the genetic counselor on Friday. It's going to be tough doing all this alone. The only thing I can think about is how I'm going to juggle therapy appointments along with working full time and 2 other kids. I ran in to this issue with my oldest who has Aspergers and ADHD because all of the options for helping him were during the day but I can't miss work. How do families handle this? There is no option of me staying home when I have to work to support the 4 of us.

[clseale]

Oh, boymomof2 , you are having to be stronger than any mom should have to be. I don’t know how I would be getting through this without DH. I hope you have some close friends and family around you that can help you through this. I cannot imagine how overwhelming tomorrow, and the next day, and the day after that look to you right now. I know this probably feels impossible, but try to find moments to take care of yourself. You can only give so much to everyone else before you deplete yourself. I’ll be keeping you and your family in my thoughts.

[Mushe]

This is so much to process, and I’m sure you are still spinning. A friend from my BMB with my son (7) recently gave birth to a baby with Down Syndrome, and she also knew fairly early on. I’ll ask her if she has some resources she thinks would be helpful. She is also a special Ed teacher, so she’s got a head start for her little guy. He’s amazing and such a cutie pie. She’s shared that educating herself over those last months of her pregnancy really helped her to feel ready. They knew that he had a clubbed foot, for example, and have already started his treatment just a few weeks after birth.