Mercede and CheyenneI got pregnant 4 months after my 21st birthday. I was young and had a 6 year old step son I was raising. I was excited to have a baby of my own to love and care for. I had a normal pregnancy and only one sonogram (they didn't call them ultasounds like they do now) when I was 6 months along. It didn't show any problems but they couldn't even tell me the sex of my baby either.
At the end of my 8th month I had a feeling my baby was going to be born soon. Three weeks before my due date I went to my OBGYN for my regular prenatal visit. The doctor seemed very concerned about the size of my baby. She informed me that my baby seem to be measuring a lot smaller than it should be. She told me she wanted me back in one week for another sonogram. I was so shocked that I forgot to tell her I had been having some cramps off and on .
I went to work upset about what could be wrong with my baby. A friend told me not to worry that her baby was born small too and was fine. Later that evening I went into labor which lasted almost 24 hrs. On September 1 1990 at 4:20pm my daughter Mercede was born, she was born on my 22nd birthday. When they laid her on my chest she was sticking out her tongue and was blue in color , almost the same color as her blanket. I asked the doctor why she was blue and he commented "She's like a chameleon, if she was on pink sheets she would be pink".
She was taken from me and went to the nursery. An hour later a doctor came in and rocked my world. He wasn't our regular family doctor, but the one on call. We had chosen a family doctor over a pediatrician, because we wanted our child to be able to go to the same doctor we all went too. At the time we didn't realize what a horrid mistake we had made. The doctor informed us that our daughter was showing signs of down syndrome or mongolism. I still can't believe that in the 90's a doctor used the word mongolism. It brought back a memory of my childhood when my mom told me that my best friends sister was a mongoloid and that she wouldn't live long. I knew what down syndrome was, there was no need for the other offensive term to be used. A good friend of mine had a son with DS and he often spent the night with us.
I later found out Mercede was on oxygen and they couldn't tell me why. I sat in my room without my baby and cried and cried for the baby I had expected but lost. I pictured this new child of mine in a plastic tent on oxygen the rest of her life. I was young and didn't know a thing about babies, especially medically ill babies. Seven days later I was able to take her home off the oxygen.
There was a lot of confusion of whether she had DS or not. The doctors were sure she did, but the nurses told me they didn't think she had it. I asked my friend to come over and she told me she was sure my daughter had DS. So then I accepted that and moved on. A month later the test results came in. My family doctor told me she had translocation 21. I asked what it was and if it had a name like Trisomy 21 has the name Down Syndrome. He informed me that it didn't but that it could be inherited. He wanted my husband and I to have our blood tested. He also told me that my daughter would be like a child with DS. So I went to a book store and ordered a book called Babies with Down Syndrome, and that is how I found out my daughter did have DS. Translocation 21 was one of three forms of DS. I called my doctor to tell him that she did have DS. He had only one other person with DS in his practice and she was only a few months older than Mercede.
A few weeks later we found out I was a carrier of the translocation. That I would have a 10% chance of having another child with down syndrome. My doctor set us up with geneticist . When Mercede was two months old we met with the geneticist. He was a very cold person, when he told me about my chances of having a child with DS, he told me I would want an amnio next time so I could abort if the child had DS. I told him that my husband and I didn't believe in abortion. The geneticist informed us that our baby was still young and that we would change our mind. But I do owe the geneticist for one thing, he listened to Mercede's heart and noticed right off that she had a heart defect. He sent us to cardiology just a few minutes later. Two hours later we find out my daughter has a severe heart defect and will need open heart by 6 months of age. If we didn't go to that geneticist appointment, Mercede's heart defect may have went unnoticed until it was too late to treat it. It is suppose to be routine for all doctors to order echocardiograms on all babies with DS. Because almost half of them have heart defects. We changed to a pediatrician after that.
Now to shorten the story, Mercede is now 15 years old. She was hospitalized a lot as a child but now is doing well. She still has to have more heart surgery in the future to replace her mitral valve and she will always be on heart meds. But you would never know it to look at her. She loves to dance, she loves working out to Richard Simmons video's. She is active in pottery class also.
Almost two years after Mercede's birth. I gave birth to another daughter with DS. Cheyenne also had the same heart defect as Mercede. We discovered her heart defect in my 8th month of pregnancy. It was an AVCanal defect. The same heart defect her sister had, and one that is very common in babies with DS. We then knew she had DS too, we had declined any testing, except for sonograms and fetal echoes. Cheyenne is 13 now and isn't on any meds and doing great. I was so excited to give birth to her. Mercede was such a joy that I actually wanted Cheyenne to have DS too, and was granted that wish.
In 2004, I gave birth to my first child without DS. Aysha is a translocation carrier like I am, she will have the same chances to have a child with DS too. She has been a handful since her birth. She isn't anything like my other two babies were. I think the next time I have a child, I'll be hoping for another one with DS.
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