“I have gone my whole life extremely comfortable in my own little bubble. There have been some tough times I have dealt with growing up, but nothing I couldn’t handle and get over quickly. My marriage and life were going just as I thought they should. Little did I know, my comfortable bubble was about to change forever.
I had an easy-breezy pregnancy; each doctor’s appointment went well with no indication that something may be different about our baby. As soon as the doctor brought her up and I saw her, I knew something was not right. She didn’t look like the baby I had pictured in my mind. Why were her eyes so puffy? She didn’t look like me or my husband at all. I only got to hold her for a minute before they whisked her away to the NICU after trying to stabilize her for what seemed to be forever in the delivery room. My husband went to the NICU with our baby and I was left sitting in the delivery room by myself, crying in disbelief that even though up until this point, everything had been perfect, it wasn’t anymore. I felt robbed of the super special bonding moment I had envisioned the last nine months, the first time I get to hold our baby. After a couple of hours when I was able to walk again, I went to the NICU to see her.
Her tiny body was in a clear box with tubes galore! Immediately I began thinking to myself, ‘Was there something I did that made this happen? Was this my fault?!’ Lucky for us, she was able to maintain her oxygen levels and she was discharged with us after 2 days. Before we left, the doctor mentioned she had a little heart murmur, which was common in newborns, but we should bring it up to our pediatrician.
A week later, we went to the normal newborn pediatrician visit and we had her listen to our baby’s heart to see if the murmur was still there. She said it was, but did not seem concerned and referred us to a cardiologist to get an echo just to make sure it was okay. With our baby only being 4 weeks old, we headed to the cardiologist appointment that would change our lives forever. I think back and laugh at how my biggest worry at the time was if I buckled her in her car seat correctly or if she kicked her socks off and her feet got cold. The echo took forever. I remember being so nonchalant about the appointment. ‘Can we speed this up? She’s gonna start crying soon! What should we get for lunch?’ After the tech finished up, the doctor came in to look for herself, then she left and brought another doctor with her. I thought it was odd but I wasn’t too concerned. We were asked to go wait in an examination room so they could check the images and go over the results. My husband and I were sitting in the room with Ryan, having a normal conversation about grocery lists or some other mundane thing. Then the doctor came in… she started saying Ryan had some narrowing in different places in her heart but it was mild and we would just need to come back in 3 months to check it. Okay, we can handle that. The next part, not so much. She began asking questions about whether either of us had ever heard of Williams Syndrome (WS).
I had a pit in my stomach. We had no idea what it was and my mind flooded with a million thoughts. She explained what it was; the dysmorphic facial features, special medical concerns, potential severe developmental problems. It was a blur of information and the only thing I could ask was, ‘Do you think Ryan has it?’ The doctor only replied, ‘I can see some of the features.’ However, the only way to confirm was a blood test that took 2 weeks to get back.
Those 2 weeks, my husband and I Googled and stared at her, trying to see if she compared to other kids who had this syndrome. This time I was supposed to be enjoying my new bundle was clouded by fear and anxiety. It was a dark 2 weeks down a rabbit hole of what-ifs and self-doubt. What are we going to do if she has it? We are not capable of taking care of a special needs child! Is she ever going to live on her own? Drive? Have a boyfriend or girlfriend? Get married? Do we have to have another kid now so someone will take care of her when we’re gone? Is that even fair to our next kid? Needless to say, there were many sleepless nights – even more so than what’s to be expected with a newborn!
When I saw the cardiologist’s number pop up on the phone, I instantly started sweating. My husband was at work so I was alone. Then, what I thought at the time would be the worst-case scenario, I heard those words, ‘Ryan tested positive for Williams Syndrome…’ I didn’t hear anything after that. I walked around the house, sobbing and hugging her. My husband and I went through all the stages of grief. However, as time passed, we accepted this fact and could begin to plan and look to the future, which was actually a relief from the past month or so of living through all those radical emotions. Now, when we look at our baby, we barely think about WS. Instead, we see an insanely cute and happy baby.
In the first 3 months of Ryan’s life, she has had more doctor appointments than I’ve had in the last 5 years. Going to the doctor gives me so much anxiety now because I have come to expect bad news. I’ve read every article, every inch of the Williams Syndrome Association website, and every Facebook post from the other parents with WS kids. I somewhat knew what to expect when it came to the medical problems these kids face, but I still had the ‘that won’t happen to me’ mentality. I knew most of their
kids had to have major surgeries before they were even 5 months old, but that would never happen to us, right…?
Ryan was due for her 3-month echo follow-up. Due to COVID-19, my husband was the only one allowed with her during the procedure, so I went out to the car to listen to music and wait. After an hour or so, I received a call from the hospital asking me to come inside. I was escorted up to the cardiologist wing for a discussion with the doctor. I didn’t know what to think. I walked into the room and I saw my husband leaning over our daughter in her car seat looking as if he had been crying… I knew something was very wrong. The doctor discovered that her heart condition had worsened quicker than expected and we would need to drive to the hospital across town immediately to have her admitted for open-heart surgery. Again, due to COVID-19, the hospital had procedures in place that only allowed one parent in the hospital with a patient, and we couldn’t switch out during her stay. We knew there was a good chance this could be the last time my husband would see his daughter. We cried and said our goodbyes and I love yous in the lobby. My husband kissed our daughter and I headed to the elevator for what would be a 2-week stay.
During the stay, we FaceTimed as much as possible so my husband could keep up with everything that was going on because it was just too much for me to take in by myself. We finally got word Ryan was approved for open-heart surgery a day after being admitted and would go in for surgery only 3 days after being admitted. I was inundated with paperwork filled with medical terminology and legalese, the hospital did the best to explain but all I could think about was our 4-month-old baby girl was about to go in for open-heart surgery, a procedure usually for people who have already lived a long and fulfilling life! Due to the missing Elastin gene and the specific heart problems, people with Williams Syndrome are at a much higher risk when they need to go under anesthesia. Any surgery they have must be in a hospital with a cardiac anesthesiologist, even minor dental procedures that require laughing gas or other light sedation. In one of the forms, the surgeons gave Ryan a 20% chance of cardiac arrest during surgery due to being under anesthesia, but she was also a ticking time bomb without surgery. ‘How can I not sign this?’ I thought to myself.
The morning came for the surgery, my husband was in the hospital parking garage before the sun came up, on the off chance the hospital would allow him to see our daughter before going into surgery as he had been going back and forth with the doctors pleading with them. No such luck, so we FaceTimed and said our tear-filled goodbyes and I love yous again before they whisked her away from me again. An hour in, we got an update that she was safely off to sleep. I remember being on the phone with my husband when that notification came in and we immediately started crying, one huge hurdle out of the way. Another hour and she was safely on the bypass machine. For 10 hours, my husband and I sat in the parking garage of the hospital, crying and watching cute baby videos we had taken the past 3 months, the longest 10 hours of our lives. I finally got the call at 8 p.m. that I could come up to the room. I walked in the CVICU room to my sweet baby, swollen everywhere with a million tubes and wires, but she was alive!
Ryan is definitely one of the lucky ones. This path we’re on now is not one we planned for or expected. People tell me all the time, ‘Oh my gosh I don’t know how you do it’ or, ‘You’re so strong,’ but I’m not. I fall apart all the time. I let the anxiety get to me, I mourn the loss of the experience I expected, but I will say I’m a better person for it. Having a special needs child has made me more compassionate and patient. It is going to be really hard, harder than I think I can handle sometimes but there’s such a great community of parents that have helped us grieve, inform, and empower ourselves.
Ryan has taught us a lot in her short 5 months with us and I know she’s going to teach us a lot more as she grows up. For all of the parents just getting a diagnosis, it’s going to be okay. If you think you’re the only one with dark thoughts, you are not alone. Allow yourself to grieve, it’s okay to be sad! It’s okay to think of those necessary thoughts and deal with them! I plan on educating myself as much as possible so I can advocate for my daughter. She is rare, she is special, she is our perfect daughter, and the world needs to know more!”
This story was submitted to Love What Matters by Madeline Clark 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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