February 7-14 is Congenital Heart Defect Awareness Week. To help raise awareness, spread knowledge and share the effects of this disease, Jayme of The Paper Deer Photography Blog, Christie of Lemon Squeezy Home and Kierra of The Irvine Home are each sharing one story of a child with CHD every day to showcase the trials, triumphs, journey and heartache of this devastating disease. We invite you to read and share this project to further our voices. Thank you. #Facesof CHD
I’m Kristen, mother to 4 boys and our sweet “heart angel” Sara Kate. Sara lived 9/6/14 – 9/11/14. We currently reside in a small town in Northern Wyoming.
In June 2014 we found out we were expecting our first GIRL! That’s right, after four energetic boys and a life full of trucks, trains, sound effects, and potty humor (what is it with boys and potty humor?), a little girl was going to join our family. A girl! I enchantingly envisioned a future of nail polish, hair bows, dresses, and mommy-daughter dates. I can finally shop in the girls section! Our boys were excited at the thought of a little sister (although a little leery of princess stuff invading their lightsabers and LEGOs).
Just two days later, the excitement came to a crashing halt.
The nurse called. She said that my Dr. would like to see me before he left town, and asked if I could come in. I didn’t think much of it; she hadn’t asked for me to bring anyone else, and didn’t say it was urgent. My husband was out of town, so I went by myself. When the doctor came in, he was visibly somber. He had bad news written all over his face. Uh oh, this can’t be good. He proceeded to tell me that Sara’s heart has some big problems, a complex congenital heart defect (CHD). Woah. Slow down a minute. Her heart? I was completely caught off guard, and a million questions raced through my mind, including the biggest one – Can she survive this? He wasn’t very optimistic. He said I’d need to see a high-risk doctor to get a more detailed diagnosis.
I miraculously held my composure in the office, but as soon as I reached my car I broke down sobbing. No mother wants to hear that something is wrong with their baby, and especially not that the baby would probably die from it. I made it to the McDonalds parking lot thinking I’d order a chocolate milkshake to drown my sorrows, but my appetite had vanished. I just sat in my car, feeling terribly alone. Finally, I got a hold of my husband on the phone and tried (through my sobs) to relay the information the doctor had given to me. Our baby girl…She is missing half of her heart. What a crappy phone call that was.
I prayed. I prayed right there in the McDonalds parking lot. Please comfort me. Please help me feel peace.
On my drive home it started to rain, a fresh summer rain. I rolled the window down and nostalgia filled my senses. I had missed the rain. We had recently moved to Wyoming after living eight years in Portland, OR. Also, the smell of sagebrush reminded me of my childhood in the Utah foothills. I knew at that moment I was not alone.
“He shall come unto us as the rain.” — Hosea 6:3
My pregnancy was incredibly rough. In addition to the intense emotions and uncertainty of Sara’s condition, I dealt with complications that kept me on bed rest and in and out of hospitals. Thankfully, the amazing people in our lives jumped right in to help. In July, I went to Utah with our boys to stay with family and be close to more advanced hospitals, while my husband stayed in Wyoming to work. It broke my heart to have my family split up, but it was the best option for our situation – for my health, and for Sara’s.
One bonus of bed rest was that I had a lot of time to spend alone with my baby girl – feeling and watching her kicks, listening to her heartbeat, talking to her, praying for her, and learning from her. Her heart was broken, yet she was thriving in the womb. Amazing. Her heart rate stayed steady, which helped steady my own. It was a surreal experience to not know how much longer she would live. Doctors told me she most likely would pass away in utero. I cherished my time carrying her in my belly.
Due to Sara’s condition and my pregnancy complications, I had many, many ultrasounds. As a result, I got to know Sara’s beautiful face, her pouty lips, her perfect hands, and her tiny toes. I fell in love before she was even born. I am so grateful for this. What a gift.
Sara’s entrance to the world was traumatic for me. Despite our best efforts to prevent labor, delivery became inevitable a whole 8 weeks before her due date. No. No! Not now! I was angry. I felt defeated. I knew what this meant – her being too small with her broken heart. It made a bleak prognosis even bleaker.
Our precious Sara Kate Mason was born 9/6/2014 weighing a petite 4 lbs. Sara was in critical condition and was immediately intubated. The next moments were a whirlwind of NICU nurses and doctors. I was able to hold her for a minute and it was pure bliss. I felt her sweet spirit, strong will, and courage. An angel.
Sara was life-flighted to Primary Children’s Hospital to be seen by the cardiologists. I was transported by ambulance. It felt so unnatural to be apart from my baby after just giving birth. This was far from the experiences I had with my first four babies. My husband caught a flight to Salt Lake City and we all reunited.
The following five days were incredibly emotional and stressful with Sara in the NICU. There were many doctors, specialists, nurses, tubes, wires, medications, social workers, and hard decisions. We had to face reality – Sara isn’t doing well. Her organs were failing. Sara’s only chance of survival, heart surgery, was out of the question; she was just too little and her lungs were too underdeveloped to attempt any current methods. We knew Sara’s time on Earth was short, so we made plans for family to come visit and say their goodbyes.
We spent every possible moment with our sweet Sara Kate. We gave her kisses as we held her head and feet. She held onto our fingers with her tiny hands. We even got to hold her (very carefully).
The day we said goodbye to Sara was the hardest day of my life, yet it was also one of the sweetest and most spiritual. I felt indescribable pain as my only daughter died in my arms, but I also felt peace knowing that Sara no longer had to suffer in her imperfect body. I witnessed incredible love that day. For us, for our boys, for Sara.
I am in awe of how much influence my tiny daughter has had on so many. People have been unified, priorities have been changed, hearts have been softened, and service has been rendered. Family, friends from all walks of our lives, and even strangers have reached out to us in support and love. We have been comforted and our burdens have been made lighter.
Sara has changed me. I am more capable of empathizing with others. I have a new view on life, and a new gratitude for every day I have with those I love. Sara has brought our family closer together as we share her memory and our grief. We look forward brightly to the day when we are all reunited.
CHD Awareness. I never thought this would be my life. This happened to other people, but not to me. Before Sara, I had 4 totally uncomplicated pregnancies and 4 perfectly healthy babies. In addition, we don’t have any family history of birth defects, or CHD’s. I never thought I would lose a child to CHD, but I did.
Before Sara came into our lives I didn’t know much about congenital heart defects, or the variety they come in. I ignorantly thought that CHD’s could all be fixed by surgery in these days of modern medicine. After Sara’s diagnosis, I started educating myself on her CHD’s (HLHS – Hypoplastic Left Heart Syndrome & AVSD – Atrioventricular Septal Defect). I was introduced to a whole new world of information. CHD’s occur substantially more often than I thought (1 in 100 births!). Surgery doesn’t fix many of them, and often surgery is only palliative. I was unaware of the severity of CHD’s, and that CHD’s are the leading cause of infant deaths.
As I have been welcomed into the community of “heart moms”, I have learned that I am far from alone in my journey. The members of the heart community are incredibly supportive of one another, and we all wish we could do more to spread CHD awareness.
Cardiac research and technologies have come a long way, and include some truly remarkable stuff! We are seeing fetal heart surgeries in utero, breakthroughs in CHD genetics, 3D prints of individual hearts being used to map out surgery, and constant improvement to diagnostic tools and surgical procedures. Despite the amazing progress that has been made, too many people still die from CHD’s. We still have a long way to go. As we all become aware of the realities of CHD’s, more research will be funded, and more lives will be saved. Lives like our sweet Sara’s.
Kristen’s blog: Mason Fam Blog
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