I have been asked to share my story in the hopes that African American families who have a child that has Down syndrome, families who have a prenatal diagnosis of Down syndrome, or families who know of someone who needs support, will read this and be encouraged…. They will know that it is still all good! As an African American woman, who has given birth to a child with Down syndrome, I sometimes feel alone in this journey. This is due to the fact that I don’t see faces that look like mine. I know that you are out there. I also know that we have been conditioned to “keep our business to ourselves”… However, I say, “Don’t fall for it; it is a trick of the enemy.” Healing and support only comes from sharing our journey with like minded people, of all races, creeds and colors. This is not only for the African American reader, it is for everyone and anyone who wants to understand that having a child with Down syndrome is not all doom and gloom. Our daughter is just that…a daughter. She is a little girl who is filled with the joy of Jesus, is the light of our lives and just happens to have an extra chromosome or so. My story starts simply enough. My husband decided that he wanted us to try to have another baby. We have been married for five years and we have a four year old son. We also have 4 children from a previous relationship. He had recently acquired the new baby itch and he specifically wanted a daughter. I was unsure if I was feeling up for the challenge of a new baby. We had just moved into our first home together and I was finally adjusting to having a preschooler in the house. Also, I became a minister in our first few months of marriage, so this was an opportunity to focus on ministry outside of the home. Or so I thought. I agreed to try to get pregnant only to humor my husband. I was 44 years old. Who would have thought it would be just that easy? Not me. However, the joke was on me because I became pregnant almost immediately. I was not feeling too good, but I never attributed it to being pregnant. I thought I had a stomach bug or something viral. My husband asked my had I gotten my period yet. Although I had not, it still didn’t dawn on me until he said something, to take a pregnancy test. I purchased a twin pack of pregnancy tests at the pharmacy while at work, then snuck off to the ladies room to take the test. I couldn’t believe my eyes! That darn double line appeared! It showed up before the 3 minute time interval they suggest you wait to confirm results appeared…I was pregnant! The day couldn’t end fast enough for me. I picked up my son from the sitter and raced home so I could retest with my husband present. I kept thinking somehow I must have made a mistake. This time, I could take the test without rushing through the directions. However, nothing changed. Different location, same results…still pregnant. My husband was thrilled. Don’t get me wrong, so was I. However, I was just a little tired of diapers and poop. I was starting over… again. But ok, if this is God’s will, then so be it. My pregnancy was as normal as any pregnancy. I throw up constantly, if I see, hear, or smell food during my pregnancies. This was quite typical for me. I shared with the kids that a new baby was joining our family. I was met with very little enthusiasm. To them, mommy being pregnant was relegated to the, been there, seen that and all we got was another little one to babysit category. Life went on; I worked full time, preached when I had the opportunity and started preparations for the arrival of our baby. I had great prenatal care, took my vitamins and ate well. We even took a trip to Jamaica to visit my husband’s family; all 5 and ½ of us. Our first inclination that there was something to worry about, came around my 4th month of pregnancy, when my triple screen came back abnormally high. However we didn’t worry much because the same thing happened when my son was born and everything turned out fine. We were offered an amniocentesis, but we declined. We had decided that regardless of the diagnosis, we would not terminate. So we just had the fetal anatomy (level II ultrasound) done to see if there were any “soft markers” for Down syndrome. After two ultrasounds we were assured that all was well and our daughter was developing normally. I was getting really anxious as the months turned into weeks. Then finally days before her birth, my c-section was scheduled for July 14, 2008. I had kicked into nesting mode, trying to have everything ready, not only for the baby, but also for normal household operations to go on while I was in the hospital. On the morning of July 14th, I woke up nervous but excited to meet my daughter. I dressed, showered, got my youngest son ready and we dropped him off at the sitter’s on our way to the hospital. I was an hour late for my pre-surgery prep and was afraid that I would be sent home for being so late. In no time, I was admitted, prepped and waiting for the anesthesiologist to administer my epidural. Then my OB arrived and this show was about to get on the road. I walked myself into the operating room, laid on the table, within minutes I was numb from the chest down. My husband was seated to my right. A screen was put up before me and we were underway. I felt the familiar pulling and tugging that was a sign that they were trying to free my daughter from the confines of my body. I soon felt light with the new ability to breathe….Our daughter was born. At 12:38 PM, Tatiana Michaela entered the world. Life would cease to exist as we previously knew it. It was abnormally quiet in the OR. I knew something was wrong, but had no clue as to what it was. I looked over at my husband for reassurance, his words were soothing but his face offered no such comfort. Something was indeed wrong, but he too was unsure of what it was. I kept asking if the baby was ok. I got no answer initially. But then as I asked again, I was told she was fine. Then I was presented with a small tightly wrapped bundle of sweetness. I was so groggy, as well as still strapped down, so I was unable to hold her. I reached up to kiss her as the nurse held her down to me to see her. I remarked that she was so tiny, but none the less grateful that she made it into the world safely. My husband and I previously agreed that he would accompany the baby to the nursery, while I was stitched up and sent to recovery. As I was being closed up, my doctor was trying to tell me in so many words what they suspected. But she wasn’t communicating effectively and I was having a hard time following her since I was all drugged up at the time. As I was wheeled to recovery my husband joined me. He still had that look on his face. I asked about the baby. How much did she weigh? You know all the good stuff that everyone wants to hear. He told me her weight and length. I said she is so small. This led him into him attempting to tell me what no parent wants to hear. Our precious baby has Down syndrome. He didn’t have the correct terminology, but I understood him enough to realize what he was saying to me. My head was swirling. I couldn’t focus. I kept wanting to sleep, but my mind kept repeating, “She has Down syndrome.” I was calm on the outside, but inside I was a wreck. What would her life be like? Would I be able to care for her? What was my husband feeling? And most importantly…WHY????? Why God did you allow this to happen? I was screaming in my heart, why? My mind was taken off of the situation for a while as we made phone calls announcing Tatiana’s birth, happily accepting well wishes and congratulations from friends and family. Our bubble was busted when the pediatrician came to the recovery area to talk to us about their suspicions. While she did not have a firm diagnosis, she was confident that Tatiana had Ds based upon all the physical evidence she displayed. I decided then and there that I would accept the diagnosis as fact, even though all the tests had not come in yet. It would make it easier to start dealing with it as it was, not as I would like it to be. I had an overwhelming need to hold my daughter. I could barely wait until I was sent to my room so she could be brought to me. The two hour wait was over, I was taken to my room and shortly after my baby arrived. I immediately leaned over, accepted her from the nurse, unwrapped her from all those blankets and held her close to me. She was brand new, tiny and beautiful. She needed me and I needed her. I promised God that I would love her, protect her and give her the life she deserved if He promised to give me the strength to deal with anything that came my way. On that day we entered into covenant. Tatiana wasn’t nursing well. She didn’t want to eat, she wanted to sleep. However, she had jaundice, so taking fluids was necessary to rid her body of the billirubin. The nurses wanted me to give her formula, but I refused. I asked for a few hours withher, to get her to nurse, and to allow my husband time to bring the boys to see her, and to bond with this child I carried for 9 months. By evening it is obvious that she needed to be placed under the phototherapylights, so I held her tightly to me before I gave her to the care of the nurse. That was the last time I held my daughter for two days. She was taken to the Special Care nursery as her white blood count had become elevated. I was scared. Was I going to lose my baby? I begged God to not take her home yet. I had been with her for such a short time. I reached into her isoletteto touch her. She was so fragile with tubes that snaked in and out of her little body. I prayed constantly for her. I told her that her mommy loved her so she needed to get better. Two days later she was out of the isolette, taking breast milk from a bottle and no tubes of any kind in her. God is truly a healer!!! She was unable to leave the hospital with me, but she came home to her waiting family four days later. Tatiana has been such a blessing to our family. I have come to realize that God didn’t do this to me but allowed it to happen for me. Tatiana has given me back something I didn’t realize I was missing….my joy. I fully understand that we are only beginning the journey on the Ds road, however, I am confident that every day that we spend withTatiana will be better than the last. Every milestone will be celebrated. Every challenge will be met with determination. We know, with love, she can accomplish anything. She may have not have enough of this or too much of that, but there is one thing that she has more than enough of and that is love…yeah she’s got plenty of that.
Cathy is a member of the IDSC. She would like to be able to reach out to everyone, but in particular, she would like to be able to reach out to families in the African American Community. Today, abortion is the leading cause of death in the African American community. Cathy would like to lend her voice in making sure that others know that there are other options out there. The IDSC is so pleased to have Cathy help us to teach others that ALL life is precious! For more information concerning the termination rate of children in the African American community check out The National Black Pro Life Union and Protecting Black Life .