This is the story of the littlest sister of four girls. She was small while she grew in my tummy, was born tiny and will most likely remain petite throughout her life. Her larger than life spirit, however, affected all of us from the moment she was conceived...before we even knew what we'd name her...before her tiny fingernails formed...before she started sucking her tiny thumb...and before her big eyes opened in the quietness of my womb.
At 19 weeks, I went in for my routine gender/checkup ultrasound. We were so excited to find out if our three big girls would have a sister or brother. We found out it was another sister and I was thrilled to find that I would soon have four girls to cherish and love. We didn't think the ultrasound tech found anything to be worried about and so my husband, Jeff, left for work.
Later, my doctor came in to speak with me with a concerned look on his face and told me that they had seen a small cystic hygroma on the back of my baby's neck and that this indicated several different chromosomal disorders. I immediately thought, "This is crazy...everything's going to be fine and I just always overreact to doctors." I tried to calm myself down, but as he explained it more, I realized this was probably something different. My baby did have something wrong and it was something I couldn't fix myself.
I left the office, hurriedly unlocked the door to my minivan, sat down and sobbed. I didn't recognize my voice as I sobbed--I was full of despair and hopelessness and felt utterly alone. I called my husband, but he couldn't understand me as I sobbed between describing the doctor's concerns.
The next stop was a maternal fetal medicine doctor who did an hour-long ultrasound of the teeny, tiny person growing inside of me. They measured and examined parts and pieces of her that I could not identify on the screen, but every time the ultrasound tech typed a new number, I imagined the worst.
We waited an eternity for the doctor to come in and tell us there was still some edema on the back of her neck and that our little girl also had puffy feet--another marker for certain chromosomal disorders. She told us "her money was on Turner Syndrome." We were told that at worst case, the fluid we saw in her feet could develop into hydrops and start forming in other parts of her body. We were also told that Turner Syndrome girls were at high risk for heart problems, kidney problems and other health issues. I just sort of zoned out while she kept talking with Jeff about numbers and statistics and why she believed it was most likely was Turner Syndrome. We decided to consent to a maternal blood plasma test which is a noninvasive screening test which extracts some of the baby's DNA from my blood.
It seemed like an eternity waiting for those results and for a full week, I drowned myself in sorrow--sobbing and imagining the worst and mourning for a baby I did not even know yet. We were on vacation in New Hampshire with our family when we got the results that came back indicating the strong likelihood that our baby had Turner Syndrome. Having a greater sense of certainty regarding what we were facing wasn't much of a relief, and I found myself still desperate and alone and feeling more and more isolated.
At some point after returning home to Texas, I decided I had to make a change in my attitude. I knew I had to rely on faith and I needed to find some support. I reached out to my mother's group at church and also found Be Not Afraid (BNA). I was called within a day and immediately felt a sense of peace I had not felt before by talking about my fears for this tiny baby. I found so much comfort by speaking to those who understood what I was going through. They knew how precious my little Clare was to me and made me feel like she was so special and her life invaluable. My Clare deserved the same all children do--love, tenderness, care, and God's grace.
I drafted a letter asking for prayers from my mom's group which was passed around to other prayer chains and friends. Prayer and reaching out for help from others saved me from the depths of my sorrow, and I was able to start focusing on the health of my baby trying to stay positive for the good of both of us.
After feeling as if it was a great possibility we may lose Clare, we started our roller coaster ride throughout the rest of the pregnancy. We were first told her heart looked good, and then towards the end of my pregnancy, they were not sure, and believed she may have coarctation, a heart defect common in girls with Turner Syndrome. The best I could do was wait and pray. She measured very small toward the end of my pregnancy, which also worried me, but my doctor assured me it was just a symptom of the disorder.
Clare Frances Hynes finally arrived on November 21st 2013, screaming and wiggling in all her glory. She was very tiny--only 5 pounds, 10 ounces, but absolutely beautiful. She stayed in the NICU for 1 week while we waited on results from tests on her heart and other organs. She was discharged the day before Thanksgiving and the entire Hynes family gave thanks to God in unison, like never before.
Clare has been home for 3 months now and has enriched our lives like we never could have imagined. There will be hardships with her Turner Syndrome, but she has taught me to love like I never knew I could. She already coos and oohs and aahs when I talk to her and gives me big smiles all day long. Her love is unconditional, just like the love God has for her. The unconditional love and prayers that I received during my pregnancy and even now from friends, family and those who don't even know my family like the peers and volunteers at BNA absolutely fills my heart.
Clare is undoubtedly a little miracle. Her sisters cannot remember a time without her. Her infectious smile brings tears to strangers--a life invaluable.