I have a hard time talking about this because it brings up so many emotions. When I think back to the day Haley was born, I feel nothing but joy. With Sienna, it’s more complicated than that. I had been having nightmares as the day got closer to Sienna’s birth. I kept thinking something could still go terribly wrong. I asked the OB if there was anything that could happen. She reassured me and told me that we were at the end and the baby looked great. I had 7 ultrasounds and they all showed a perfectly healthy baby. We were days away from the due date. I expressed concern over her lack of movement. They told me everything was fine. I asked if something could come up because we hadn’t done the genetics screening. Her response to that was less reassuring. She said, “If you had concerns, you should have gotten the genetics screening.” I said, “I don’t have concerns. I’m just asking if something could still come up. All my ultrasounds were normal, right?” “Your baby is measuring perfectly and everything looks great. Get some rest and get ready to meet your baby.”
Of course, now I know that my worries were warranted. It’s probable that Sienna wasn’t moving as much because she had Down syndrome and she had low muscle tone. It’s possible she was tired because she had a heart defect. That was another thing that never came up on any 1 of the 7 ultrasounds. When I tell people that I chose not to get a genetics screening, I feel judged. It’s the same puzzled, baffled, look every time I mention it. “Why wouldn’t you get the genetics screening?” Then I end up making that person feel uncomfortable when I tell them I had 4 miscarriages. Even my OB questioned me. The Ultrasound technicians questioned me. They even spent extra time looking for Down syndrome markers. None of them showed up. The truth is that the first trimester screening just looks for markers. Nothing is definitive. And if your markers are high, they want you to have an amniocentesis which has a high incident of miscarriage. I would never have agreed to it. I worried about so much the entire pregnancy and I just wanted to have the most relaxed gestation possible for this baby. I wanted to enjoy the pregnancy. But when Sienna entered my world and they told us she had Down syndrome, I immediately blamed myself. When I really think about it, I made the decision for us about the genetics screening. I told Jason that I didn’t want the screening and I explained why and he agreed. He never would have argued with me after all I had been through.
The day Sienna was born I woke up and my water had broken. It was wonderful knowing definitively that I was in labor. We called Jason’s parents and they came down to pick up Haley. We left for the hospital giddy. I was slightly emotional saying goodbye to Haley but she was so excited to be a big sister. I couldn’t wait to give her that sibling I had fought so hard for her to have.
When we got to the hospital, everything was very normal. They had to make sure my water had really broken and that I hadn’t just become incontinent. After a few hours, they admitted us. I still wasn’t having contractions so they decided to give me some pitocin to get things moving. As the contractions sped up, so did the pain and I asked for the epidural. Immediately, I felt relief but I also felt dizzy and my blood pressure dropped. The anesthesiologist had to give me a different kind of medication to get my blood pressure up. The baby’s heart rate was all over the place while this was happening.
I felt better but the baby’s heart rate still continued to bounce up and down. I was terrified. The nurses were downplaying it. They were intent on keeping me calm and they were doing a good job. As time passed, I got closer to being dilated and the nurses prepped me for delivery. Labor was fast and she came out in 4 pushes.
When she came out, she wasn’t crying. I looked at her and my first thought was that her head looked a little small and I got worried about microcephaly. My pregnancy took place during the height of the Zika virus. The nurses laughed and said she was fine but they were worried about her color and they ran her over to the UV light. Jason went with her and started to take pictures of her as they measured and weighed her.
My OB was talking to me and she started to ask me if I wanted any more children. My placenta wasn’t coming out on it’s own. It was possible they’d have to do a procedure to remove it and that could potentially lead to my uterus being removed. I knew this was a concern from the Asherman’s syndrome. I said that this was probably it for us but to do everything she could to try to avoid it. A few other doctors rushed in and did an ultrasound. To be honest, Jason and me were both nervous about this. Now looking back, I think we were so worried about me that we didn’t pay attention to what else was going on in the room.
After waiting 30 minutes, my placenta came out. They asked me if I wanted to breastfeed and I said yes. Sienna latched like a champ. She was beautiful. Jason and I gushed about how clueless we had been that she was a girl. We really thought she was a boy. We were both so happy to tell Haley she had a sister, which was what she wanted.
When I finished nursing her, I told the nurses to go get my parents from the waiting room so we could tell them. That’s when everything changed. I suddenly noticed the look on the nurse’s face that had examined Sienna and something was up. She said, “Before we get your parents, can I talk to you for a minute?”. I knew right then and there. I looked at Sienna and I knew her eyes looked almond shaped. But she was beautiful. The nurse said, “Some of Sienna’s features can be indicative of Down syndrome and we think another doctor should come take a look at her to make the call.” My heart sank. It felt like the walls were closing in on me. I wanted to run and never look back. I wanted to scream. This wasn’t happening. This had to be some sick joke. After all we went through, this couldn’t be happening. We had already been through so much. Why was God punishing me? Hadn’t I been through enough? I immediately couldn’t breathe. The nurses gave me some anti anxiety medication but it did nothing.
Another nurse came into the room. She grabbed my hand and started to tell me about her friend who had a beautiful child with Down syndrome and how much that child had enriched her life. She started to tell me how Pennsylvania was one of the best states in the country for kids with disabilities. Sienna would be approved for medicaid and that would help with medical expenses. I shut down. Her kindness helped me from completely losing it but I wasn’t processing a single word. I asked her if the other nurse could be wrong. She said that it was possible and only the doctor would know for sure. In came the doctor. He could not have been more soul crushing. He examined her and said there was no doubt that she had it and when I asked, “What does that mean?” He started to list everything negative. He said she would have developmental delays. It would take her longer to walk and talk. He said she could have heart problems. She could be more prone to Leukemia. I shut down. Jason was detached. I looked at him and he looked like he was in shock. The doctor left and I cried. The kind nurse grabbed my hand again and said, “This baby is a blessing and she is beautiful.” I asked to hold her again. She was so beautiful. This was my baby and I loved her.
It was that moment that I remembered we still had to tell my parents. They were outside waiting. How was I going to tell them this? I started to cry. The nurse grabbed my hand. I asked her if she could do it. I just couldn’t do it. When they came in and the nurse told them, they both continued to smile and they held her and said she was beautiful and that it didn’t matter. I was so relieved and touched by their reaction.
Now, I look back on this day and I’m sad. I’m sad because Sienna’s birth was one of the saddest days of my life and Haley’s birth was probably the best day of my life. I have guilt. I know now that these feelings and reactions are normal. Imagine one of the best moments of your life snatched away from you. That’s what it felt like when they told me Sienna had Down syndrome.
I’m still very emotional thinking about it. I recently wrote myself a letter on the day I received Sienna’s diagnosis.
To Haley and Sienna’s Mom,
I know what you are thinking. Somehow, this is your fault. You pushed for this baby. You fought for this pregnancy. You were scared to death that something would go wrong during labor and it has. You should have just called it a day after the fourth miscarriage.You think that you just sentenced your family to something awful. It’s hard to see clearly now through all of the emotions you are processing, but she’s your baby. She is the same baby that has been kicking you for months, doing flips in your belly while you did yoga. This is your baby and she is the baby you are meant to have. You’re the mother God chose for her and you’re going to realize that in time.I’m not going to sugarcoat this. It’s going to be the toughest year of your life. Get your big girl pants on and prepare to work harder than you ever have. Right now, you’re a good mom to Haley and you’ve done so much to guide and influence her in positive ways. What you are facing with Sienna is going to be your biggest challenge. You are going to grow and evolve in ways that you never dreamed possible.You’re going to worry about Haley. You’re going to feel like a burden has been placed on her. You’re wrong. You’ve just given Haley the gift of a lifetime. She is going to learn empathy at an early age. She is going to be Sienna’s fierce protector and it’s a role that she will gravitate to all on her own. You will watch the most amazing love and bond grow between the two of them and it will move you. It will make you realize that they are meant to be with each other.Your marriage is going to face it’s toughest year. You will handle this in different ways. You will feel isolated and alone at times, but that won’t last forever. Realize that you are both doing the best you can. There is no right or wrong way to deal with this. You will both process it at different speeds. Just know that you’ll both get there. Be patient and kind to one another.Let yourself cry. Let yourself grieve. Don’t feel guilty. You are going to become so strong. You will protect your girls with a fierceness that will move mountains. In addition to being challenged, you will be rewarded. Sienna will change you and that’s a good thing. You will learn to take things as they come. You will appreciate the little things. You’ll stop looking too far ahead and you’ll realize that every day is a gift. You will work hard to help Sienna and it will be gratifying. You will celebrate her accomplishments. She is a warrior. She will surprise everyone. Don’t let the doctors limit her. You will meet amazing doctors but you will meet doctors that don’t see anything but Down syndrome. Trust your instincts. You know your child and you know what’s best for her.You will be welcomed into an amazing community. It will take you time to feel like you belong there, but you will start to feel like you have another family. You will ask them for advice on some of the biggest obstacles you’ve ever faced. You’ll be rewarded with friendship and love.One day, you’ll wake up and this won’t seem like some big nightmare that you’re recovering from. You’ll stop seeing Down syndrome and you’ll only see your baby. You will think she is perfect in every way. You’ll always be worried about her, but you’ll do everything you can to empower and strengthen her. That’s your job as her mother.I know right now it seems like life is never going to be the same, but that’s true with every child. It gets better. Motherhood is the hardest and most rewarding job you’ll ever have. So, put those big girl pants on and buckle up for one hell of a journey.