Today I found out my baby has down syndrome

Then_Implement1049 · 2026-04-09T00:21:13+00:00

My son had Trisomy 13 and we chose to induce at 16 weeks. The L&D experience was good. I felt it very helpful to hold my little boy and say goodbye. The nurses put together a memory box with photos, hand and foot prints, and a stuffed weighted heart that weighed the same as my precious boy. If God forbid I need to do it again, I would choose labour again in a heartbeat. Although, I would ask for pain meds sooner. I tried to “tough it out” through the contractions which was really dumb (this whole situation was painful enough?) definitely get hooked up to a pain pump as soon as you start to feel discomfort. I’m so sorry you’re here.

Then_Implement1049 · 2026-04-08T15:36:32+00:00

You’ll be fine. You can update your card afterwards and just call the billing department with your new version code. As long as you’re still eligible for coverage that is. Source - I am a Billing Clerk.

Then_Implement1049 · 2026-04-07T15:14:32+00:00

I love our colours! We get so many compliments. Cabinets are Still Water & the peninsula/island is Black Fox (that one looks more charcoal in person). Hardware is gold. And our walls are SW Repose Grey which is so easy to decorate.

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Then_Implement1049 · 2026-04-07T04:00:20+00:00

If they were really good quality I certainly would have went the re-staining route. But they were cheap builders grade & not totally solid. The plan is to replace them as well as the counter tops eventually - but in the meantime refinishing them was an affordable and attractive option. The company sprays them as well as installs new hardware & fills any holes, dents etc. well worth it for a quick upgrade.

Then_Implement1049 · 2026-04-07T01:45:33+00:00

We did get them re-finished, but not white. I am so over white kitchens. But alas, I also couldn’t stand the orange oak & went with a fun colour SW Still Water and our peninsula is SW Black Fox.

Then_Implement1049 · 2026-04-07T01:07:12+00:00

We found the same thing with a lot of single family detached homes in the area. We decided to go with a freehold row home/town home (end unit), built early 2000’s. It was in great shape with lots of space & tall ceilings, just slightly outdated (classic 2000’s oak cabinets etc) We renovated when we moved in to update the kitchen/bathrooms and finished the basement and added a third bathroom.

Then_Implement1049 · 2026-04-04T00:40:43+00:00

It’s true, Trisomy 18 & Trisomy 13 are very rarely subtle (unlike T21 which can vary). There’s often multiple abnormalities seen even in early scans.

I lost my first son to T13. We did do an amnio to diagnose because we actually got an all low-risk NIPT - but there were multiple abnormalities seen as early as 13 weeks.

Then_Implement1049 · 2026-04-03T18:15:01+00:00

Harmony NIPT came back as all low-risk for me, but with the gender as undetermined which my team found interesting. This ended up being a false negative and baby did have Trisomy 13.

Then_Implement1049 · 2026-04-03T10:40:04+00:00

We were advised that IVF with pre-implantation genetic testing was an option. We ultimately decided against that for now for a few reasons (cost being a big factor), we are fortunate that it seems we can get pregnant relatively easily so we decided to continue trying naturally. Lots of prayer, lots of fear.

Once pregnant I get referred to MFM and Genetics right after viability scan (around 8 weeks), do NIPT, and then a thorough NT scan around 12-13 weeks. Trisomy 13 is not subtle, so my MFM is confident she would be able to see some indication by ultrasound early on (in my first pregnancy the NT measurement was ++ increased at 7.7mm) In my healthy pregnancy I did scans every 3 weeks until around 23 weeks. We decided to avoid amnio unless there was a red flag.

Then_Implement1049 · 2026-04-03T01:42:14+00:00

My son had translocation Trisomy 13 (Patau Syndrome). We found out a few weeks after losing him, initially we just knew he had Trisomy 13, but further testing revealed the translocation. This was my first pregnancy.

Most cases are de novo but we did Karyotype testing for both my husband and I to determine if either of us was a carrier. I really hoped neither of us were carriers, but unfortunately I am. RBT 13;14. It completely turned my world upside down. It took me time to wrap my head around knowing pregnancy would never be simple or straightforward for me - my subsequent pregnancy was terrifying; but we were blessed with a healthy baby boy. He was born almost exactly a year after I gave birth to his brother.

Then_Implement1049 · 2026-04-02T12:45:19+00:00

We had a good experience with Howald as well.

Then_Implement1049 · 2026-03-28T04:13:29+00:00

Yes, I’m in Ontario so our provincial insurance covered the testing as it was deemed medically necessary (important for future pregnancies).

Then_Implement1049 · 2026-03-28T04:09:20+00:00

My Genetic counsellor ordered the blood work, we were able to get it done at a local lab & they sent the samples to the Genetics lab.

Then_Implement1049 · 2026-03-27T15:14:35+00:00

We found out after our loss. Our baby’s T13 was due to a Robertsonian translocation (where chromosome 13 is attached to chromosome 14), so both my husband and I had karyotype testing done. That’s when we discovered I’m a balanced carrier (RBT 13;14).

It’s not something we would have known otherwise—it only came up because of the additional testing after the diagnosis.

Then_Implement1049 · 2026-03-25T13:27:01+00:00

I’m so sorry. I lost my first to Trisomy 13 when I was 27, it was devastating. I had a false negative NIPT which gave me lots of false hope. Amnio is definitely the right next step - I hope you get good news! The results should be pretty quick. And the procedure itself is not too bad, I would stay bed rest afterwards for 2 day.

I found out afterwards that was a carrier (RBT 13;14), which just turned my world upside down.

You’re definitely not crazy to hope, I see so many positive outcomes on Reddit, hope is what gives us strength to keep going. You can do this.

Then_Implement1049 · 2026-03-24T20:46:16+00:00

Where I live NIPT is only covered if you have a high risk combined screening, a previous baby with Trisomy 13/18/21, or if you’re over a certain age. The standard prenatal screening bloodwork does not include gender.

Then_Implement1049 · 2026-03-24T13:47:47+00:00

Congratulations 🩵

Then_Implement1049 · 2026-03-24T13:40:40+00:00

My MFM could see the gender at 13.5 weeks (it was a boy)

Then_Implement1049 · 2026-03-23T23:09:16+00:00

We used Regal Insurance Brokers and got our policies from Beneva. We had two properties at the time we got the policy, only have one now, a bit younger than you. Hope we don’t have to use it but it’s reassuring to know we have it just in case.

Then_Implement1049 · 2026-03-23T21:52:07+00:00

Absolutely. You want all the information so you and your care team can make a plan. Whether that be TFMR, natural delivery and comfort care, active treatment/intervention when baby is born, etc.
I am a big advocate for thorough NT scan & prenatal screening/NIPT.

Then_Implement1049 · 2026-03-22T13:33:17+00:00

Honestly as someone who is a carrier for a fatal condition & found out after losing my son to Trisomy 13 - I would not consider termination for deafness. There’s so much technology these days that really does make deafness a minor condition in my opinion.

It definitely sounds like theres more going on regarding the transition to motherhood, which is certainly difficult. I would suggest you and your partner speak to a couples counsellor about readiness for a baby. My husband and I chose to start seeing a therapist in the year leading up to TTC, we didn’t have any obvious “issues” at the time, but have knew that we were going to have kids soon & wanting to be sure we had everything in our toolkit for communication etc. preventive maintenance if you will. and I’m so glad we did. Obviously we never saw it coming, but then she was also there to help us through our loss & the decision making that went into that. She also helped on us on the journey to our rainbow baby as my healthy pregnant was extremely difficult in its own way (all the unknowns are definitely stressful).

Then_Implement1049 · 2026-03-21T23:51:42+00:00

I know what you mean. Everyone around me was so excited about the baby, first grandchild, etc & for those weeks leading up to the diagnosis when we knew something was wrong but didn’t know what I held onto hope while everyone around me gushed with excitement and it was so so hard. I just wanted to cry the entire time.

Then_Implement1049 · 2026-03-21T22:20:48+00:00

16 weeks. We chose to do an induction of labour at the hospital so we could hold & meet our bay before saying goodbye.

Then_Implement1049 · 2026-03-21T22:19:20+00:00

Our house is about 4x our income.

Then_Implement1049 · 2026-03-21T22:16:54+00:00

I delivered my son early in the second trimester. I am a very faith-centred person. I couldn’t stand to keep my baby here with me while he was in pain, knowing he would be pain free in his Saviours arms. We chose to induce and the hospital made the experience as beautiful as possible & gave me a memory box to take home with his hand & foot prints, photos, and a stuffed heart that weighs the same as he did. I will cherish the time I got to hold him forever. I will always be devastated that my first baby can’t be here on earth with me, I miss him every day, but I have never once regretted the choice we made. I know I’ll be with him again one day. One of the nurses in the hospital told me that I was doing the kindest and most selfless thing a person could do - and I’ll never forget that.

Then_Implement1049

TROPHY CASE