‘I have to tell you something. I’m so sorry.’ I burst into tears. I hated others being sad about our baby.’: Parents shocked by Down syndrome diagnosis after signing paperwork to not do genetic testing, ‘We are keeping the baby’

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“Chris and I were married 8 years ago in June of 2011. We couldn’t wait to start our life together and we both wanted kids. When Chris asked my parents for my hand in marriage my dad said, ‘Well, I hope you want kids!’ I couldn’t wait to be a mom.

Cami Jane Photography

We decided together that we would wait 2 years to start trying for a baby so we could save some money. I was working as a teacher and the plan was to save my salary so that I could stay home with our kids and be a full-time mom. After a year of unsuccessful trying, we decided to see a doctor to find out what was going wrong. We went to the top guy in our area because of his high success rate. I remember praying to God and asking, ‘if we can’t have biological children, please make it very clear so we can move on and start the adoption process.’ The results came in with nothing showing on my end. Then it was Chris’ turn, not much wrong their either, some slow swimmers but according to the doctor not a big deal and an easy fix. It didn’t feel like a biological child was out of the question, so we decided to give it a shot.

Courtesy of Amy and Chris Calacci

The doctor recommended IUI. Intrauterine insemination. This is a process where they wash the sperm and put the best swimmers in turkey baster style, very romantic. In all actuality this was very painful and made me feel like a failure. My paycheck soon became the infertility fund. Fast forward a few months later and we had done 4 IUI’s, started acupuncture and added clomid to the mix and still nothing. Things soon really started to fall apart with the doctor we were seeing. The acupuncturist told us the semen analysis was invalid because he waited far too long to test, so it was completely inaccurate. We became very unhappy with this top doctor as he gave us no attention and if you asked a question, he would answer in a way that made you feel silly for even asking. An example of this was when we asked him a question about what he was doing. He replied not with an answer, but: ‘Do you want a baby or not?’ The final straw which told me this doctor wasn’t for us was when a nurse was drawing my blood. In an effort to ‘bond’ with me over my struggle to have a baby, she told me her story. She got pregnant naturally with twins and one of the twins died so they tested the other twin and it turned out she had Down syndrome, so she had to terminate. I was so sad when I came home and told Chris this story. he replied saying, ‘We would have taken that baby.’ That was our last day with that doctor.

We decided to move on to a doctor recommended by a friend of my sister’s and he seemed to be more in line with our values. When we started with this next doctor it became very clear this was a much better fit. A smaller office, much more attention, a respect for each life created and the doctor actually performs all of the procedures.

With our new doctor we did 3 more IUI’s and then started talking IVF. It’s amazing how a simple fix can snowball into full-blown invasive, painful treatments. This was a very tough decision for 2 Catholics to make. How can we respect life at conception and do IVF? We decided we would give every embryo a chance at life. I always wanted a big family but what if we end up with 15 embryos and over the years, they all take?? That was a very nerve-racking thought but it was what we felt most comfortable with.

My first cycle we got seven eggs but only 3 survived past fertilization. None of the embryos looked great so we decided with the doctor to transfer all 3 to give us the best chance that maybe at least one would survive. For two weeks we thought about what it would be like if all 3 took. What were we going to do with triplets?? Won’t that be so fun and also so crazy at the same time? Well, two weeks later we got the call – I wasn’t pregnant, none took. I was devastated. The day we found out the babies didn’t make it was the same day my brother and sister in law’s baby girl was born, which they were adopting. This made me question everything. Why did God lead us in this direction and not towards adoption? Had we made a mistake? We would be parents by now had we adopted. What were we going to do now?

We took some time off to heal from the pain of losing 3 babies and then started talking adoption again. In July 2014 we signed up for an adoption agency and also decided to do one last attempt at IVF while I was stress-free during the summer. This round was much like the last. We got 7 eggs and 3 made it through fertilization. This time they looked a little better, so we decided to transfer 2 fresh embryos and freeze the 3rd. Once again, the transfer didn’t work and we lost 2 more embryos. I remember seeing Chris get the call from the doctor and watching as his face get somber, but he still tried to hold it together for me. When he hung up with the doctor we both were trying our best to protect the other from our sadness. We were ready to move on from fertility treatments and we put our energy back into adoption. Our goal was to finish all the paperwork by December, which was also when we would transfer our final embryo just to give that baby a chance at life with the realistic expectation that that embryo most likely won’t take.

So December 2015 came and we transferred the final embryo. This was our only frozen embryo, the one that didn’t look as strong as the others, the one that shouldn’t have made it. This embryo was a fighter from the beginning – it took. We finally had achieved a pregnancy and the best part was we got to surprise our families with the news on Christmas morning. They had all suffered along with us and finally we had joy again. We couldn’t wait to share that joy with those who stood by us through all the tears and trials. The promise of new life was finally on its way!

A few months later on April 5, 2016, I got a life changing phone call. The call came after letting my first graders out for the day. The nurse practitioner informed me that our unborn baby has Down syndrome. WHAT? I was in disbelief. When we first graduated from our IVF doctor and went to a regular baby doctor we made it very clear we only wanted testing for things we can medically fix. We signed paperwork saying we didn’t want any blood tests and minimal ultrasounds. We really only wanted to do the 20-week anatomy scan. Things didn’t go as planned. My doctor ordered blood work and I wasn’t aware the blood work was testing for Down syndrome. I was in too much shock to cry. I remember asking how accurate these results were and hearing her say, ‘I’m so sorry,’ over and over.

‘Do you want to do an amnio?,’ she asked.

‘My husband is on a trip with my mom, dad and brother. We will decide about the amnio later, but we are keeping the baby,’ I told her.

‘Ok, I’m so sorry,’ she repeated.

We hung up. I was speechless. Most of my support system was gone, what do I do now?? I texted my younger sister Lindsay, she was the only family member around at the time.

‘Having a major panic attack. The nurse practitioner just called with the results of my second blood test with positive results for Down syndrome. It’s 98 percent accurate. Chris and mom are in Georgia… don’t know what to tell them.’

My sister and her then 17-month-old son were at my house when I got home. I didn’t cry on the way home that day but my sister, the crier of the family, had been. We didn’t talk a whole lot that day. We mostly spent time researching the test and seeing if it indeed was as accurate as it claimed to be. I knew the second I heard the news that it was true, but researching kept me busy. When my sister went home, I did what I would never recommend, I googled and I worried. I was most concerned with how and when to tell Chris. I didn’t want to ruin his trip so I decided to wait to tell him in person. These were the hardest most tear-filled days of my life. I went to work each day to keep my mind entertained with my little first grade distractors and spent my evenings with my sister. I avoided all adults and made it through those days.

I also called my mother-in-law and had her come over so I could tell her the news. I asked her if she could break the news to my father-in-law and brother-in-law. I remember her being very positive. I am sure she was full of emotions but she didn’t let that show and she was as supportive as anyone could be. I told her the results were 98% positive and she told me she believed our baby was the 2% because she believed in miracles. I remember thinking but not saying, ‘I believe our baby is a miracle as well, but in my heart I knew the baby is the 98% and did have Down syndrome.’ After just 2 days I already felt so fiercely protective of this baby no matter what he or she was like.

While waiting for Chris to come home, these were the crazy thoughts running through my head.

Even though I’d always wanted a daughter, the thought of one with DS terrified me. I found myself praying the baby was a boy because in my mind teenage boys are more accepting and I want him/her to have friends. I was so worried about things like a girl with DS getting her period but I think I was most worried about my relationship with a daughter with DS. I always dreamed my daughter and I would have an amazing relationship, one like I have with my mom, but I thought if she had DS, those dreams would die too.

How will we support a child the rest of our lives?

Who would take him if something happened to us?

Will Chris and I be able to make it through this?

Will Chris blame me? Will he blame himself?

What will we do with a child living with us forever?

We are going to stand out! I don’t want to stand out!

We have to have more kids so this child has friends.

Will other kids avoid us because they are afraid of someone different? It was as if everything I dreamed about and imagined with the baby growing inside me went away with the news.

I just didn’t want this news to be true.

Thursday finally arrived and that night I went to pick up Chris and my parents at the airport. I wanted to tell Chris alone and not in the car so I waited until we got home. Basically as soon as we walked through the door, I said, ‘I have to tell you something…the baby does have Down syndrome, I’m so sorry,’ and I burst into tears. I couldn’t even look at Chris. He really didn’t say much of anything the whole night. He was just soaking it in. I gave everyone the grace to have their own first reaction and I knew everyone just finding out needed time to process. The next day I had to deliver the news one final time, this time to my parents. I went to their house.

‘What are you doing here?!?,’ they asked.

‘I need to tell you something,’ I said.

I sat down, blurted it out, and again burst into tears. My mom said, ‘I’m so sorry,’ followed by, ‘we can do this.’ My dad looked devastated. His whole body started shaking as he tried to comfort me and tell me it was going to be ok. He then quickly left to go for a run, it’s what he does when he is stressed. I asked my mom to deliver the news to my other siblings because that part was so draining and the reflection of other grieve made me fiercely protective of my baby. I hated others being sad about our baby.

Exactly a week after I learned of the diagnosis, we met with the genetic counselor. She was amazing. By the time we left that appointment I felt so much better and realized this diagnosis changes nothing. All my hopes and dreams about my child could still be. We originally wanted to wait until birth to find out the gender, but we knew that the genetic counselor was the person who should have that honor. She happily delivered the news that we were having a baby girl! I lost it one more time when I heard it was a girl – it became so real. The words the counselor said sent me on a better path.

About a week after that appointment, I jumped head first into the Down syndrome community and never looked back. We met real families living and loving this life and we began to realize we could do that too. On July 21, 2016, Emmy was born 6 weeks before her due date and came out with one tiny cry. Once she made it to the NICU and we were told she was stable and doing well, the joy began. From that day forward it has been the most beautiful journey.

Courtesy of Amy and Chris Calacci
Courtesy of Amy and Chris Calacci

I could not have designed a more perfect child. She is everything I never knew I always wanted. She has and continues to be so sweet and easy to care for. She started sleeping through the night early on, she rarely cried and besides being a very poor eater she has been the easiest child to raise. She’s smart, loves music, understands emotions better than I do, and loves like no other. Caring for her is no different than caring for another child, things just happen slower with her, and she goes to more appointments than the average kid. There are so many gifts in the slower pace.

Courtesy of Amy and Chris Calacci
Courtesy of Amy and Chris Calacci
Courtesy of Amy and Chris Calacci

Childhood moves way too fast, but with her we get to enjoy each stage a little longer and she still hits every milestone. It’s not at all like I imagined, raising her makes us lucky. She is loved by everyone, has so many friends and has helped me make more friends than I’ve ever had before. She makes life better and our outlook so much more positive.

Courtesy of Amy and Chris Calacci
Courtesy of Amy and Chris Calacci
Kim Maier Photography

From the day she was born almost all of my worries about the future were gone. The only thing I still worried about was giving her a sibling. A sibling would push her to be her best and I’d love her to have a buddy for life. When she was 18 months, we got the surprise of our life when we found out I was pregnant ON MY OWN with a baby boy. Another answer to our prayers. Today she is 3 years old and her little bother Reese is one. Watching them together has been the greatest privilege of my life. She loves to smother him with love and attention and also shows him who’s boss when he goes after one of her toys. He is the best baby brother and allows her to love on him most of the time.

Stevie Cruz Photography
Courtesy of Amy and Chris Calacci
Courtesy of Amy and Chris Calacci

Our life is ordinary and so ‘normal’ with the most extraordinary kids. The journey was long and hard but the lessons were huge and I wouldn’t change a thing. Every shot, every tear, all the morning sickness, every pound, every prayer, every dollar was so totally worth it, because it led me to my children. We truly are the lucky few.”

Courtesy of Amy and Chris Calacci
Kim Maier Photography
Courtesy of Amy and Chris Calacci

This story was submitted to Love What Matters by Amy and Chris Calacci of Orange County, California. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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‘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

‘The cancer unit? How’d this go from ‘Hawaii 5-0’ to ‘Fighting-4-Life’ in 24 hours? This can’t be right.’: Dad insists he’ll be ‘taking my family to the top, whatever it takes’ despite infant daughter’s Down syndrome diagnosis, then cancer battle

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