‘She was the most beautiful baby. But I felt helpless. My wife in the NICU crying, my child on a stretcher crying.’: 2 moms welcome daughter with Down syndrome after miscarriages, she’s ‘the best thing has happened to us’

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“Growing up I never wanted to have kids. Don’t get me wrong, I loved them, I worked with kids, I was always good with kids. In fact, everyone would always ask me when I was going to have kids because I was a natural with them. It wasn’t till I was in my 30’s and with my wife that I started thinking about having kids. Wondering what our little ones would look like and the type of parents we would be. In my head I had it all worked out. We did our research, had a consultation, picked a donor, scheduled the IUI and we would start our family – boy was I wrong.  The road to getting pregnant came with so many ups and downs. After 3 failed attempts and 2 miscarriages, I knew I needed to give my body a break, so my wife Lisa decided she would give it a try.

Courtesy of Patty Sneddon-Kisting

When we found out we were pregnant, we were nervous – it felt like we couldn’t really celebrate till we knew we were in the clear. We were cautiously optimistic but after hearing the heartbeat twice, and being released to our regular OB, we knew we hit that mark. We were over the moon! Lisa started experiencing some of the joys of pregnancy – cravings, squirminess in her belly, emotions, and LOTS of feelings. We took pictures, announced to friends and family.

Courtesy of Patty Sneddon-Kisting

Our first visit with the OB came with some slight concerns, they did a scan and found there was some thickening of the Nuclear Fold, in which we were referred to a specialist. The concern gave us a little worry, but hey, we were pregnant and having a baby, life was good. We went to the specialist for the first trimester scan, and spent 45 minutes watching our little babes on the screen for the very first time. It was amazing, babes was squirmy, so tiny and we fell in love instantly. We sat in that consultation room for what seemed to be forever. Time went so slow. Finally, the Doctor came in and explained what was going on. He started sharing a lot of information about thickening of the nuclear fold, signs of a smaller nasal cavity, and evidence of a cystic hygroma. He then said the words that I will never forget.

‘Your child has a high probability of a chromosomal abnormality. Do you want to terminate?’

It was a punch to the gut and not what we were expecting. I was floored, in shock and mad. No! No we do not want to terminate. We just need to think. He then went on to say, ‘You know it could be nothing, or it could be something.’ But at that point I don’t think we were listening. Before we left, we made an appointment to do the prenatal panorama screening, however asked if we could see another specialist.

Courtesy of Patty Sneddon-Kisting

We went back for our next appointment, with a new specialist and knew right away we were going to like her. She went over all the information she could with us and explained in detail the findings from the original screen. Did the blood work for the prenatal test and then we had another two week wait. There was a lot of crying and talking over those two weeks – Can we do this? The what if’s. Did we do something wrong? So many feelings wrapped up into a ball of raw emotions. The genetics counselor called us and explained the test result came back inconclusive/no result and that we could take the test over again, or look at other options. So back to the specialist we went, they did another scan and the measurements of the nuclear fold went down… a lot… which was good, right!?! We did the panorama test again and waited another two weeks.

Courtesy of Patty Sneddon-Kisting

In the meantime, Lisa started to show, we were talking about names, I was trying to get her to exercise more. Lisa had me going out on errands all the time for decaf coffee, ice cream, waffles, and pretty much anything she asked for. We planned a trip to Arizona to see family and just to get away as these back and forth trips to the specialist and hopscotch game of news was rather exhausting. The day we left for Arizona we received the call that he Panorama test came back high risk, a 91% chance of Down syndrome. Again, so many emotions of ups and downs going on. Did we want to move forward with the amniocentesis just to have 100% confirmation. Did it matter?? We knew we were going to have a baby either way. We did end up having the amniocentesis which confirmed that our little peanut did in fact have Down Syndrome.

Courtesy of Patty Sneddon-Kisting

The few weeks following, we took some time to navigate our very conflicting feelings, we cried, got mad, placed blame on things we could have done differently, emotions of being scared about the unknowns, coupled with the joys of being pregnant (or having a little one) and giving life. We then went to our local chapter of GiGi’s Playhouse, a Down syndrome achievement center, for Mom’s Night Out and met some amazing moms that have kiddos with Down syndrome, and I just knew everything was going to be ok. We announced to our friends and family on March 21 (National Down Syndrome Day) and were met with so much support, comfort, thoughts and cheerfulness.  Over the next few months, there was a lot of specialist’s appointments, monitoring of the two small holes in her heart, and a lot of research that we were trying to do to prepare ourselves.

Courtesy of Patty Sneddon-Kisting

On July 25, 2017, with a room full of Doctors and NICU staff, Addison Remy was born and our worlds turned upside down with love. She was the most beautiful baby we had ever seen. The holes in her heart they were monitoring thankfully closed up on their own. Her liver however sent us into the NICU and we were right back into the state of worry.

Courtesy of Patty Sneddon-Kisting
Courtesy of Patty Sneddon-Kisting
Courtesy of Patty Sneddon-Kisting

Addi’s bilirubin continued to rise and the Doctors were worried about Biliary Atresia in which her bile ducts where blocked. We spent the next few days filled with pokes, pricks, checks, and scans. I will never forget the helpless feeling I had leaving my wife in the NICU room crying and my child was on a transport stretcher crying. It was one of the worst feelings I had experienced.

After 10 days and a promise from the radiologist that all bile ducts were in take, we were finally able to take our little bundle home and we haven’t looked backed.

Jill Lehmann Photo + Design
Jill Lehmann Photo + Design

These last 2 years have been full of love, learning, joy and grief, but one thing is for sure – Addi is the absolute best thing that has happened to us.”

Courtesy of Patty Sneddon-Kisting
Courtesy of Patty Sneddon-Kisting
Courtesy of Patty Sneddon-Kisting
Courtesy of Patty Sneddon-Kisting

This story was submitted to Love What Matters by Patty Sneddon-Kisting of Des Moines, Iowa. You can follow Addison’s journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

Read more touching stories like this:

‘They can’t read or write. They don’t understand danger or time. But they understand pure love. And they’ve felt it 29 years.’: Married couple now ‘longest living’ pair with Down Syndrome, sister says it’s ‘nothing short of a fairy tale’

‘The subject line read, ‘Down Syndrome Baby.’ My heart skipped a beat. That very morning a precious baby boy was born.’: Cancer survivor adopts ‘special gift’ son with Down syndrome after infertility from endometriosis

‘I started to panic. I told my friend we were having this child regardless. ‘Would you really?,’ she responded.’: Mom grateful for taking the ‘scenic route’ with son diagnosed with Down syndrome

‘I held his tiny hand. I knew what was coming. We made the heartbreaking decision and waited for the chaplain arrive.’: Parents ‘devastated’ over loss of son born with Down syndrome, congenital heart defects

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