Vanessa is 12 years old today. I was involved in a car accident when I was 19 1/2 weeks pregnant. After the accident, I was transported to the hospital and admitted.
The doctors wanted to observe me for 24 hours to assess the baby. I was placed on a monitor and the doctor came in and did an ultrasound to measure the baby. At that time, I was given a follow-up appointment and was discharged from the hospital. Two days later, my husband Tony and I drove to my appointment to meet my doctor and High-Risk Coordinator. They told me the results of the ultrasound showed the baby had short arms and legs and had a hole in its heart and that the baby may need open heart surgery after birth. They suggested an amniocentesis. We scheduled the appointment and completed the test. It was 48 hours later that we learned that we were having a little girl, a girl with Down syndrome. We were devastated. We cried for twenty-four hours it seemed and then we pulled ourselves together to meet with the doctors again. We were told that we needed to make a decision regarding the pregnancy. Of course, I would not consider an abortion. This baby was a gift from God and we both wanted our baby!
I transferred to a high-risk physician in Akron. He met with us and we shared that we wanted to do everything possible to bring our baby into this world. He was fantastic. He sent us to a Pediatric Cardiologist who did an ultrasound on her heart while in utero. He was very supportive and said she would not need heart surgery. We continued with weekly appointments. I continued to work and kept our lives as stable as possible. We talked with our children about the baby and they were all supportive and excited for our future. During that time, we spent time researching and educating ourselves about Down syndrome because except for our friend Scotty, none of us had any experience with Down’s. My Husband and I are both in the medical profession and are knowledgeable, but all the knowledge goes out the window when it happens to you.
Vanessa Antoinette was born May 16, 2005. I was 34 weeks pregnant and had a doctor appointment that morning when I had a Non Stress test done and the doctor did not like the results. Immediately, I was moved to another room and had a Stress Test. The nurse picked up the phone and called the doctor. The baby was in distress and she needed to be delivered. The doctor looked at me and said, “Are you ready to have a baby”? I was quickly taken into the operating room to be prepped for a Cesarean section. Dr. Justin Lavin performed the emergency C-section and Vanessa was born at Akron General Hospital six weeks early, weighing 2lbs, 11 oz. as well as being diagnosed with Down syndrome. She was in distress because the umbilical cord was wrapped around her neck. She was immediately stabilized and transferred via a mobile intensive care unit to Akron Children’s Hospital where she spent five weeks in the NICU. She was fragile, jaundice, and could not suck. She had a tube placed down her nose to feed her. She could not maintain her temperature and was placed in an incubator. She had round the clock care and fortunately, I was able to stay with her every night but three while she was there.
After surgery, the first two nights I spent at Akron General Hospital recovering. I was then discharged after two full days and permitted to see her. Tony picked me up in the car and we drove over to Akron Children’s hospital. I was transported by wheelchair to the NICU. It seemed as if it took forever to go through the halls to finally hold my baby. When we finally entered her room, Vanessa, looked as if she would not survive. We were not permitted to hold her, but we could place our hands in the incubator and touch her. I prayed that she would live so we could give her the best life a little girl could have. My husband is a physician and I am a nurse, but that did not matter….all the education and training did not prepare us to parent a child with special needs. The third night they offered us a room at the Ronald McDonald House. It’s a beautiful facility that assists parents with sick children, providing them a place to stay while their child or children are hospitalized. I was grateful for the opportunity to stay at the house. However, I felt extremely lost and concerned for Vanessa, so I asked if I could stay at the hospital. I spent the following days with Vanessa and Tony would spend the nights after he did he did his rounds at the hospital. I would go home to see the other children, Nicole, Dominick, Brooke, and Mariah, and to sleep. During that time, friends and family helped with dinners, transporting the kids, and checking in on them. In the morning, I would get the kids off to school or work and then I would drive back to the hospital so Tony could go to the office.
We kept this schedule for five weeks.
As the days passed by, in my opinion, Vanessa did not appear to have Down syndrome. I casually stated to a nurse that I thought she looked typical. A few hours later a genetic doctor came into her room and began talking to me about the soft markers that indicated that Vanessa did have Trisomy 21 also known as Down syndrome. She did not have the slanted eyes, but the doctor explained that she did have Down syndrome and showed me her toes and that there was a space between them wider than a typical child. At the time, I think they thought I was in denial and they needed to make sure that I knew the truth. But in my mind and in my heart, she was the most beautiful baby ever with or without a disability. The things the doctor pointed out were very subtle and because she was so frail, I couldn’t really tell. Afterwards, they tested her hearing and she failed. Hearing loss is also another characteristic of Down syndrome. The doctors ordered an ABR test to define her hearing loss. They attempted the test first in the ER; however, they were unable to obtain results. They then performed the test under anesthesia and we then learned for sure that she had mild to moderate hearing loss.
Several days before she was discharged from the hospital, the doctor’s scheduled a surgery to place the g-tube, this is the tube that would be placed into her stomach and that is how she would eat every 4 hours around the clock. Tony and I were the only individuals that could feed her and this was our choice. As a nurse I was afraid if we taught someone else how to do it, it may run in too fast, maybe the tube would come out, (which is done too many times) or maybe they would not recognize if it was in the wrong place. Vanessa was discharged a few days after it was placed. She weighed 4lbs 10 ounces at this time.
It was great to be home! She made it through the tough times in the hospital and now we could begin our new lives with our daughter.
We quickly completed the paperwork for Help Me Grow and were connected with several fabulous therapists; physical therapy, speech therapy, and occupational therapy. And yes, they also came to our home. What a blessing! I truly was out of my comfort zone, even as a nurse. Vanessa was premature, frail, she was being fed through a feeding tube every four hours around the clock, she had hearing loss, and diagnosed with Down syndrome. Thank goodness for all the support! We were home, she made it and we were on our way! Tony and I felt with God all things are possible and this little angel fought to be here and she has just begun to bless our lives!