An update to my NT scan followed by Harmony blood test

melitabonita · January 2014

I know its been a couple weeks ( a couple rough weeks) but I just wanted to thank all the ladies who were really supportive of me during some of my hardest times during this pregnancy so far.

I just found out that the Harmony test indicates that our baby has a 99.9% chance of Down syndrome. I am scared, and so worried about caring for a baby with Down Syndrome, and so worried that it will have a serious heart problem. I am also so relieved that our baby does not have Trisomy 18 or 13. I also got to find out that we are having a little boy, therefore our instincts suck, because we both thought girl! Hah!

Csltdk · January 2014

First off, congratulations on having a boy! I have relieved to hear about the negative trisomy, and although you do have a high risk of down syndrome, many children live happy full lives and best of luck with everything!

flmomof4 · January 2014

I'm sure that was difficult news to receive, but I'm glad it wasn't something worse. Thinking of you as you begin this new road. And congrats on the boy!

sparkleboot · January 2014

Congratulations on your little boy!

I wish I had some sage wisdom to offer. I'm a big believer in getting the most information you can prior to birth so I hope that you're able to build a support network of friends, family, and resources in the Down Syndrome community to help you along this journey. It's apparent how much you both love your son and providing a secure and loving home is half the battle when raising any child, regardless of their special needs. Please keep us updated.

tourqeyes · January 2014

Hi Melita - Congratulations on your little boy, I'm sure you will give him all the love in the world and be amazing parents. Thinking of you!!

We both have crappy instincts. I too thought my boy was a girl!

sarahdallen · January 2014

Congratulations on a boy! So fun! I am sure it was hard to get this news. I wanted to let you know that I am a developmental social worker who works exclusively with children and adults with their families that have Down Syndrome and Autism. Please feel free to PM me any questions or anything as it is going to be a lot to sort out. I start working with families at this stage/age and continue into aulthood. I'm here if you need me.

AKbadwolf · January 2014

Congratulations on your Baby Boy!! I also echo others who have said many people live long full lives with DS. I would talk to the Dr's office and get hooked up with a support group now to help work through the emotions I am sure you both are feeling. Hugs mama!

lizzybeth13 · January 2014

Congratulations on a little boy! I'm sorry for the worry you are going through right now. I will be sending thoughts and prayers your way for no further complications - sounds like your LO is already loved very much and that's the best thing you can do for him!

Katieryan13 · January 2014

Congratulations on your baby boy! I'm not sure if someone has mentioned this already, but there is a blog that I read that might have a lot of information. Kelle Hampton has a daughter with down syndrome and she writes about it.

www.kellehampton.com

SuperKim13 · January 2014

Congratulations on having a baby boy. I can imagine that this was difficult news to receive, but knowing this early does give you a chance to ensure that he gets the care he needs right from the beginning. It sounds like your son will also have the benefit of an incredible loving family. My thoughts are with you!

ghostof5letters · January 2014

Congratulations on your baby boy! It's got to be a huge relief that the tests for trisomy 18 and 19 are negative. Your are going to love your beaming baby boy to the moon and back. As someone with an Aunt with DS, there is no greater person to have in your life. Prayers for a healthy heart.

littlemissmarla · January 2014

Congrats on your little boy! Best of luck on this journey, he will be blessed to have a loving family

kmawb · January 2014

Congratulations on the baby boy!!

I don't have much to offer in the way of advice other than lean on us when you need to during what I'm sure is a very emotional time for you and your DH. Also, check out the Special Needs board on here (https://forums.thebump.com/categories/special-needs), I'm sure they can answer alot of your questions/calm your fears.

Good luck, I'm sure this little boy couldn't ask for better parents!

Ylvelill · January 2014

Gratz on the boy! Keep strong

melitabonita · January 2014

Thanks so much everyone.

I don't know how to describe how I'm feeling right now. I'm not necessarily sad, but I can't stop crying.

AKbadwolf · January 2014

Also www.themaidenmetallurgist.com has a little boy with DS and writes about some things too.

runrinserepeat · January 2014

Congratulations on your baby boy. I second the rec to check out the Special Needs board.

runrinserepeat · January 2014

Congratulations on your baby boy. I second the rec to check out the Special Needs board.

nola 1017 · January 2014

Congratulations on your baby boy! I am so happy the trisomy was negative. I can't imagine the feelings you must be experiencing right now. DS children can live full, happy lives and I think it's great that you know now so they can monitor his heart as early as possible. Thinking tons of positive thoughts for you and your DS. ((HUGS))

pantherRN · January 2014

Congrats on your sweet little boy!

I hope everything else goes smoothly and his heart is healthy. I'll be thinking of you!

brooklynesque · January 2014

Congratulations on your little boy. Downs is not generally something a parent would choose for his/her child, but if you survey people who have Downs, something like 97% say they are happy with their lives. I think your little boy will be a source of joy and blessings in your life. Definitely try to find a parents group to learn more.

katnipeverclean · January 2014

Congratulations on your baby boy! What joyful news! Stay strong as I am sure you will be wonderful parents to your child!

ghostof5letters · January 2014

melitabonita said:

Thanks so much everyone.

I don't know how to describe how I'm feeling right now. I'm not necessarily sad, but I can't stop crying.

((((hugs))))

I think whenever our reality shifts it's perfectly normal to mourn the life that has forever changed. It's 100% OK. You need this time to process and prepare, and the minute your son is born, nothing else will matter but this beautiful little boy.

You're a strong woman, and his DS will not define him as an individual, nor will it define you as his mother. You're going to be amazing. He's a lucky boy to have a mom that cares and loves him so much.

ahjahbaba · January 2014

Your little boy will be a beautiful blessing! I can't imagine what your feeling but you and your husband are obviously very strong people. What a lucky child he will be to have you as parents.

beff12 · January 2014

Congratulations on the baby boy! I'll be praying for your family. People with DS are some of the most incredible people I've ever met - so much love and joy. You will be a great mama to your little boy!

JMCB09 · January 2014

Congrats one your baby boy! A flood of emotions is normal, I'm sure. That baby boy is going to be the center of your world.

V1981 · January 2014

Yay a boy! Congrats! He's going to melt your heart.

TurtleMonsters · January 2014

Congrats on your little guy!! Boys are the sweetest;) My niece has DS, and while there are challenges, she's an awesome little spitfire. You'll learn a love you've never known. I know each child is different, my niece has very few significant health issues. Medical technology has come so far and they can do a lot to help if there is anything. It's understandable that you are both happy and sad, if I read correct. That is a big thing to take on, but it's doable and you'll find you can handle the challenge an become a stronger person then you may realize.

I often recommend parents of children with special needs (after having one of my own) this story story (I apologize if you've seen this) that really helped:https://www.our-kids.org/archives/Holland.html

there are lots of really nice blogs and support groups out there too. Enjoying the Small things is one I particularly like:) Hugs to you!!

mcvgal · January 2014

Congrats on your little boy. I am glad that it's not t13/t18.

I know it must seem like a lot of news to handle right not, but knowledge is power and I will definitely keep you and your family in my thoughts and prayers.

kmawb · January 2014

TurtleMonsters said:

I often recommend parents of children with special needs (after having one of my own) this story story (I apologize if you've seen this) that really helped:https://www.our-kids.org/archives/Holland.html

Beautifully written piece.

alygoo615 · January 2014

@melitabonita Please send me a PM if you ever want to vent about feelings you're afraid to share with other people. Absolutely no judgment here. As you may or may not know, I am currently waiting our Verifi results to confirm what the doctor believes to be Trisomy 13 or 18. When we knew that Down's Syndrome was likely a best case scenario, that still didn't make it any easier and I'm not afraid to admit it.

I'm feeling things I never though I'd feel in my life. You are the only one who has been through what you are going through. Other's have had a down syndrome diagnosis and still won't be going through the exact thing you are- everyone is different. Each situation is completely unique.

I did a lot of research when I was hoping for Down's and there is a lot of great support out there.

Lastly, @ghostof5letters is exactly right with "I think whenever our reality shifts it's perfectly normal to mourn the life that has forever changed. It's 100% OK."

I couldn't have said it any better myself. When you were picturing your future with your baby (girl), this is the last thing you expected. You need time to mourn the loss of that future and plan the wonderful future with your baby boy!

TRS48 · January 2014

God Bless your wonderful little baby boy

He will be the light of your life and you will know just how to take care of him when he arrives, Mommy-instinct will kick in instantly! We are here for you always!

singingirl96 · January 2014

Hello. First of all, congrats on your little boy! As I shared last time, because of my son's heart condition, I was given a 1 in 2 chance of having a child with Downs. I searched high and low and found that Down Syndrome babies are wonderful people and many live very meaningful lives. Many are high functioning and are very capable of going through school and graduating college even!

Yes, there may be challenges that may come from having a special needs child, but you'll find that you'll adapt just fine and it will become your normal.

What you're feeling is perfectly normal since you're mourning the loss of the "ideal" scenario you were envisioning. That is a perfectly normal feeling.

You may want to visit this page: https://community.babycenter.com/groups/a315/down_syndrome They are very helpful on here. I visited them when I was looking at a very strong possibility of DS. They offered a lot of support.

As far as a heart condition is concerned. Yes, many DS kids have heart conditions. When they do, the probability of it being a Complete AV Canal Defect is very high. In fact, it is assumed that is the defect a child has when accompanied by DS. My son wasn't born with DS, but he was born with an AV Canal Defect. Having my child go through surgery is the by far the hardest thing I've ever had to go through. Hopefully that won't be the case with your son. But I wanted to share that with you because if he does indeed have a heart defect (and it would likely be the same defect as my son), the prognosis is very good. My son had his surgery at 7 months of age and is doing wonderful. You'd never know anything was ever wrong with him. No restrictions, no meds, no future surgeries, he'll be able to do sports and other regular activities.

So, you may want to make sure they are extra thorough when they do the anatomy scan. That was the first time they saw anything wrong with my son's heart. If that is normal, than I wouldn't worry about a heart defect. But make sure they check your son's pulse ox before leaving the hospital.

Good luck to you. I'm sure your son will brighten your life and will surprise you on how much of a blessing in your life he'll be.

acciovino · January 2014

Congrats on your baby boy! God chose you to be this special boy's mama.

melitabonita · January 2014

You guys are wonderful. The links have been so helpful.

I've read Kelle's blog in the past but I forgot what it was called/the web address.

My genetic counselor is sending me a big envelope with lots of info in it as well as information for local groups of parents with children who have Down syndrome.

We still have yet to announce our pregnancy to our families, and now I struggle with telling them about this. I'm not sure how everyone will take it. One of my sisters knows whats going on (I haven't told her the official results, it's my nieces 2nd birthday today, so I don't want her worrying about me, she should enjoy her baby's day). So there is one family member, other than that I'm not sure how to tell the rest.

drunkenhandstand · January 2014

Congratulations on your little boy! Boys are so much fun! I know you are processing all of this still and sorting out emotions on this huge news but I wanted to send some encouragement. Having a child with DS can be one of the HUGEST blessings in disguise. A very good friend of mine had a little girl with DS (unexpectedly - they didn't do any testing so they found out at birth) and I wish you could speak with her. This little angel (now 2 years old) has touched so many lives. She is by far the cutest kid I have ever seen!! She has brought so much love and joy into her parent's lives. It's truly amazing to witness. Anyway, I just wanted to send you some virtual hugs and let you know we're all here to listen.

abrazz · January 2014

Are you going to have anymore tests like an amniocentesis or are they going to wait for the anatomy scan to look into it any further? I am really happy that they ruled out trisomy 18 and 13. I also really hope your little boy's heart is okay.

melitabonita · January 2014

a_brasuell said:

Are you going to have anymore tests like an amniocentesis or are they going to wait for the anatomy scan to look into it any further? I am really happy that they ruled out trisomy 18 and 13. I also really hope your little boy's heart is okay.

I am just going to wait for the anatomy scan. I feel pretty confident with the Harmony results.

DelilahSun · January 2014

Little boys are wonderful so congratulations :-) I'll be thinking of you and your family on your journey.

reils500 · January 2014

Congratulations on your baby boy! Thoughts & prayers for a healthy heart.

rattlecanqueen · January 2014

Congrats on having a boy! I agree, the emotional roller coaster you're on is completely understandable. I'll be keeping you and your little guy in my prayers for everything else to be healthy, particularly his heart. Lots of(((hugs)))!

I work with several students with DS, and let me tell you they are some of the most fantastic kiddos I've met. While they do have a disability, some of them are able to function in a general ed classroom for the majority of their day. The other DS students who spend more time in the sped room, have still cultivated skills (academic and life) and more importantly friends throughout the school.

In fact one of the Down 's syndrome students wore a shirt that said "keep calm. It's just an extra chromosome" today.

(((Hugs)))

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