The Curtis Clay family, whose son “Q” receives therapy at Our Children’s House at Baylor Dallas, has been selected as the March of Dimes’ 2014 March for Babies Ambassador Family. This is their story.
Curtis and I were thrilled to be expecting our first son. We vowed to make sure this was a healthy pregnancy after we were fortunate to conceive through assisted reproductive technologies in my late 30s.
At that time, we were unaware that one in eight babies is born prematurely each year in North Texas and that the chances of an African-American woman going into preterm labor were higher than any other ethnic group.
Six months into my pregnancy those precautions and preparations no longer mattered. My water broke without any warning.
When we arrived at the nearest hospital, the medical team began to search for our son’s heartbeat. They could not find it.
For the very first time, it crossed my mind that my baby might not survive. Then, out of nowhere, our son emerged from his hiding place and we were relieved to hear his heart racing.
The doctor said he would try to prolong the pregnancy as long as possible; however, this facility was not equipped to handle babies born this early or small. So, we were transferred to our health care provider’s hospital, which had a Level III newborn intensive care unit.
A few days later, I developed an infection which led to an emergency cesarean section. I gave birth to Curtis “Q” Clay IV at 24 weeks, 4-days gestation. Q was more than a day old before I was able to visit him because I was still ill. My first glimpse of Q was a picture our lactation consultant shared with me.
Our NICU journey was a roller coaster. During Q’s early days, there were moments of hope when he would show signs of improvement. But, Q later suffered a Grade IV intraventricular hemorrhage (brain bleed), retinopathy of prematurity, he needed ventilator support and countless blood transfusions, and battled infections.
On the outside I was a strong mother who willed my son to live. However, on the inside I was terrified to bond with Q because I was afraid that I would lose him.
I thought having those feelings made me a horrible mother, but it was my reality. One day shortly after I was discharged, our phone rang. When the hospital’s name appeared on the caller ID, my heart stopped. I looked at my husband with so much fear. Thankfully, it was the billing department verifying our benefits.
After 122 days it was finally time to take our bundle of joy home. Our house was transformed into a makeshift NICU. We had to manage heart monitors, oxygen requirements, infection control and the many doctor and therapist appointments. This was in addition to balancing the regular demands of life and raising our youngest daughter, Makayla.
Q is weaker on the left side of his body because of his brain bleed, and he has been diagnosed with a mild form of cerebral palsy.
At nine months, Q had brain surgery to shift the drainage of cerebrospinal fluid from the damaged side of his brain to the healthier side. Initially, he spent 3-4 days a week in occupational and physical therapy.
But, our biggest obstacle has been Q’s feeding issue. He will only eat a few items so calorie supplements and nutritional drinks serve as his primary sources of nourishment.
Q is almost 3 years old and just recently tipped the scales at 22 pounds. Naturally, as a parent you want your child to have a healthy diet. We’ve tried several methods, but mealtime for us usually ends in frustration and feelings of failure.
As time has progressed, we have added speech and feeding therapy. Q’s therapy regimen continues to be quite rigorous, but we can see the amazing progress he is making through the milestones he has reached.
On Valentine’s Day 2013, the ugly “prematurity monster” crept into our family’s life for the second time in a 22-month time frame. My younger sister gave birth to my niece Samiyah who only weighed 15 ounces.
We were fortunate to spend four and a half months with her before the complications of her premature birth became too much for her small body to fight. Our Warrior Princess earned her angel wings on July 8.
Our family supports March of Dimes and participates in March for Babies in honor of Q and in memory of Samiyah. March of Dimes works hard to prevent the epidemic of premature birth.
Both Q and Samiyah benefitted from surfactant therapy to treat respiratory distress syndrome, which was discovered by a March of Dimes grantee. The foundation also helped initiate the system of regional NICUs for premature and sick babies. Q would not have received the level of care he needed without March of Dimes.
We want to help continue the cutting-edge research to determine the causes of premature birth so that one day all babies get the healthy start they deserve.
The 2014 Dallas March for Babies is at 9 a.m. Saturday, April 12, at White Rock Lake’s Norbuck Park.
This blog post was contributed by Tanya Clay, mother of “Q”, a patient of Our Children’s House Baylor Dallas.