Disclaimer: This story contains details of miscarriage and may be upsetting to some.
Life After Miscarriage
“In mid-2020, I truly felt I had a perfect life. I was married to my best friend, had the most incredible, beautiful daughter, and after years of trying to have another baby, we were finally pregnant! September 17, 2020 plays like a slow nightmare. ‘I’m sorry, there’s no heartbeat.’ We lost our baby at 12 weeks. After lots of testing, our doctor finally cleared us to ‘try again.’ After going through that incredibly difficult miscarriage, both emotionally and physically, and knowing how long it had already taken us to get pregnant again, I had resolved to never ‘try’ or even pray to have another baby ever again. So, I didn’t.
January 2021, the combination of feeling bloated and extremely tired stopped me in my tracks. I had a few early pregnancy detector tests left over in the ovulation kit I had used to try to help us get pregnant in the previous year. I ran upstairs, locked the door of the bathroom, and took a test. The lines showed up immediately! I was shocked and terrified at the same time. I wish I had an exciting and lovely story of how I told my husband, but I don’t. I literally yelled for him to come upstairs. I was shaking and I just said, ‘You are never going to believe this!’ He cut me off and said, ‘I know! I just know!’ I just stood there and said, ‘Oh my gosh, babe! I’m so scared! I don’t want to go through all of that again—I cannot lose another baby.’ I could not put Lyndi (our daughter) through all of that again. (Lyndi had cried and cried when we miscarried. She had asked us for siblings for years.) Mark, as he always has been, was so calm and reassuring. He let me know everything would be alright; that whatever happens, we would get through it together.
It took me until February to make an appointment with our amazing OBGYN (who I have been seeing for over 7 years). I was too afraid of what I may or may not see. I was afraid of having another miscarriage. I was excited. But, every time I would get excited, I would have this overwhelming fear soon after. Because I was alone in the doctor’s office when finding out I had miscarried due to Covid protocols, my husband vowed to make every single appointment; and he did. Even though that meant sitting in the parking lot for up to two hours at a time.
On February 11, 2021, I went to my OBGYN appointment. She asked me if I wanted her to look at the screen first instead of together and I said, ‘Yes, please.’ She was so incredible and supportive. Before doing the ultrasound, she said, ‘No matter what happens or what we see, I am here for you all. I will help you.’ They stopped the ultrasound and asked me to please wait a moment. ‘Good news!’ the doctor said, ‘We have a heartbeat!’ I started crying right then and there. My husband was out in the car waiting for me. Because of COVID restrictions, I was in the appointment alone. They went and got him and had us get out our phones to record.
I just thought they were being so nice to us and we were excited about this pregnancy for us because everyone knew we had just miscarried several months beforehand. ‘Here’s a baby, anndddd… here’s the second one!’ ‘What?’ I said. ‘There’s TWO!’ My doctor told us. ‘One baby, with a heartbeat. And, the second baby, with a heartbeat! LOOK AT YOUR BABIES! You are having twins!’ I was in such shock and disbelief! My husband is a fraternal twin, but it never crossed my mind I would have them. Ever. My grandmother had told me for months she was praying we would have twins! The office told us our babies would be due in September.
We had bi-weekly appointments, in the beginning, to make sure things were progressing as expected. Within a few appointments, the doctors talked to me about doing prenatal testing. This NIPT (noninvasive prenatal testing) helps determine the risk that the baby could possibly have genetic abnormalities. It is a very simple, quick blood test from the mom. I had declined it both with Lyndi and with the pregnancy I had recently lost. My doctors asked if I would be willing to do it this time. We did not know why I miscarried in September. This way, in the terrible case I miscarried again, we could possibly get some answers as to why.
Down Syndrome
Several weeks later, while I was at work, I received a phone call from our OBGYN directly. She asked if Mark was nearby, and if he wasn’t, if I could get him on the phone so we could all speak together. I don’t remember why I thought she was calling. It never crossed my mind that it would have anything to do with the results of the NIPT. She let us know pretty quickly that our results had come back with a high probability of over 80% that one or both of our boys would have Trisomy 21, also known as Down Syndrome.
To say I was speechless would be an understatement. I felt like a ton of bricks had hit me and I couldn’t move, think, or function. I went to the bathroom and cried. I couldn’t stop crying. I work nights as a critical care nurse. I cried off and on for nearly 12 hours. I was scared. On top of fearing I would miscarry again, I was now afraid of this high probability of Down Syndrome. What did this mean for our little family? What would the future look like for this baby(ies)? Would others accept our little babies? I cried the entire way home from work. I called my husband screaming crying. ‘Why is this happening to us? Why did people pray for us to have another baby? What is happening?’
Our OBGYN office got high-risk physicians onboard immediately because we were carrying twins, and now this Trisomy 21 probability. Many babies born with Down Syndrome have congenital heart defects and other anatomical abnormalities that the doctors need to be aware of during the pregnancy. This way, both the mother and babies are monitored and the medical team will be aware in case immediate intervention is needed at birth, or soon thereafter. We declined an amniocentesis because I didn’t want to do anything that could possibly cause any chance of miscarriage; even though we knew the risk was low. So this meant we would be given an at-birth diagnosis. This also meant we would go through our entire pregnancy not knowing if both boys had this, one boy, or neither. I will be honest, I did pray God would take Trisomy 21 away from the babies. I kept thinking, ‘A more than 20% chance that the risk is not there, right?’ I googled at least one hundred times if NIPT test results could be wrong for Down Syndrome.
I grieved… for days. I cried and cried. I remember crying to Mark saying, ‘What if no one accepts our babies?’ Mark looked me right in the eye and said, ‘WE will accept our babies! We will love them just like we would any other baby! Lyndi will love them both just as much! This is our little family. They will be perfect!’ From that day on, I consciously chose to celebrate our little ones. My family had been begging me to do a gender reveal. I was grieving, even though only Mark and I knew. I hadn’t wanted to do it. But talking to my husband changed everything for me. I agreed to do the gender reveal, which was so fun! I cried the whole way there because I was so afraid to find out what we were having. This would make the NIPT results even more real, to me. I prayed, ‘If possible, Lord, I would love for the babies to be the same gender; so that they could be there for each other.’ Lyndi and I felt it was one boy and one girl, but I kept praying. We couldn’t believe IT WAS TWO BOYS! I was truly SO excited!!
High-Risk Pregnancy Journey
As we followed up with our high-risk physician, we found out that Baby A had a single umbilical artery (where there should have been two). There were no soft markers for Down Syndrome specifically. The doctors thought maybe, Baby A was the one with Down Syndrome. Because an SUA can be seen in babies with Trisomy 21; but again, no other markers. We also found out I had a partial placenta previa with Baby A. I continued to work as a nurse with no issues with my placenta previa.
In the days leading up to what we now know was the birth of our boys, I was in and out of the hospital with early labor contractions. They were able to stop that and get me back home. On Friday, July 2, I began to bleed and had to go back to the hospital. I continued to bleed off and on, so much so, they admitted me overnight to watch me and the boys. On July 3, I had a very large episode of bleeding, so they transferred me to a higher level of care hospital. This was in case I would have to deliver the boys early; they would have the higher level NICU so we could be together in the same hospital. Over the next 48 hours, my body would be prepped with steroids and magnesium to help the boys’ lungs development and their brain protection. They thought we would need to deliver via cesarean section on July 4, but we were able to keep the boys in one more day.
While this was all happening, our daughter Lyndi was staying with our amazing family. My mom, brother, and sister helped us with Lyndi. Our families never wavered in support of us; doing whatever was necessary to make things happen.
Time To Deliver
On July 5, I started having severe contractions and started bleeding uncontrollably. This is even after two units of blood that morning. The doctor put her hand on my leg and said, ‘Momma, it’s time to get those babies out. We have done all we can do to keep them in there. It’s time.’ I looked at my husband and started crying. We both said, ‘Okay. Let’s go.’ I asked him to text our moms. We felt confident we had done everything humanly possible to keep the boys in up until this moment.
At 3:02 p.m. and 3:03 p.m. on July 5, 2021, the most amazing two little boys were born at 28 weeks and 4 days. They, of course, had to rush them both to the NICU. Caden had to be resuscitated in the operating room. His placenta had abrupted and his entire sack was full of blood and blood clots. If we had waited even another 12 hours, the boys and I would most likely not be here. I had lost over 2 liters of blood. Seeing the boys in the NICU after surgery, I remember thinking, ‘Wow! They are literally perfect in those little incubators—and they are both mine!’
Life With Twins
They tested Caden soon after birth for Trisomy 21 (Down Syndrome). Six days after birth, I was able to finally hold Cooper. When I held him, I knew. He was the one with Down Syndrome. I do not know how I knew, but the feeling came over me. I asked them to test Cooper as well. The doctors did not think it was him and at now 29 weeks, did not feel he had any ‘markers,’ but they respected my request and did. Days later, Caden’s testing came back negative; he did not have Trisomy 21.
On the morning of July 20th, I checked the boys’ online patient portal to see if anything new had resulted. I saw Cooper’s Microarray report had resulted. So, I asked Mark to sit down and read it with me. Sitting there, together, in the comfort of our home, we read, ‘This patient has three copies of chromosome 21, consistent with a clinical diagnosis of Down Syndrome.’ I started shaking and crying. It was confirmed. It was real. I am so glad we found out together, in the comfort of our home, so we could talk and prepare ourselves. Then we drove up to the NICU like we did every single day the boys were there and held both boys. I cried and talked to Cooper. I told him how much I loved him, and I was so happy to finally know it was him with this little extra secret.
After 57 days for Caden, and 62 days for Cooper, our boys finally went home, ahead of schedule!!! We were so happy to finally be reunited as a family. Over the next months, we would work together as a family, getting a schedule together. I am so blessed to have the most extraordinary husband who is incredible with our children!
It took us a bit to tell people about Cooper’s diagnosis. I do not know what I was afraid of exactly, because we have the most incredible family and friends. As expected, every single person was extremely supportive! I used the book ‘The Ups and Downs of a Very Special Superhero’ by Melissa Brown to tell Lyndi about Cooper’s diagnosis. It is such a wonderful, informative book! Lyndi tells everyone about Cooper. She is so proud that he has Down Syndrome! We were able to celebrate our first World Down Syndrome Day on March 21. I have made so many new friends because of Cooper’s diagnosis! So many people have messaged me saying, ‘Welcome to the best club you never knew you’d be in!’ I could not agree more.
To any new mom with this diagnosis, or who is pregnant with a high risk of Trisomy 21/Down Syndrome for your little one, know that everything you are feeling is valid. It’s okay to grieve. It’s okay to cry and mourn what you thought your life for your little one would be like. But I would also like to say that the moment you hold your child, the love that will fill your soul is truly indescribable. To any twin mom, who like me, was so afraid of what it would be like to have one twin with Down Syndrome and one without, know it’s just like having any baby! Your baby wants you to love them and care for them. And while, yes, the differences between the boys are becoming more apparent developmentally, it has just become a normal way of living for us; having two busy, funny, adorable, perfect, inquisitive little boys! We continue to adapt our family for their needs. We went on our first family vacation recently to celebrate the boys turning one year old! It was the best vacation we have ever had!
Even though this journey over the last couple of years was definitely not in our plans, it continues to be even better than we could have imagined. Together, our little family of 5 hopes to show others we are just a regular family with an extraordinary story!”
This story was submitted to Love What Matters by Becca Rouco from Florida. You can follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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