Ceres, California
I am writing this story in hopes that it will help new parents whose children have just been diagnosed with MDS. When my daughter Jessica was born, I was 21 years old, and my husband and I had been married for almost 3 years. I did not have the AFP screening performed because my mother had asked me, "well what if there is something wrong, would you terminate the pregnancy?" Realizing she was right and how much she knew that I could never do that to My child I said no and opted to not have the testing done.
I did have a difficult pregnancy with Jessica. I went into pre-term labor at 6 months and was put on complete bed rest; in and out of the hospital 4 times to stop my labor; and monitored at home for contractions. I feel that it was a blessing in disguise that I didn't know ahead of time about Jessica's down syndrome just because I would have worried all day long, not knowing what to expect.
When Jessica was born, I did also have a difficult delivery. She had shoulder dystocia and the doctor said she should have been c-section. Regardless of the difficulty, looking at my beautiful baby girl I fell in love. She was born at 10:53 p.m. and I kept her in my room that night holding her in my arms just marveling over her. The next morning the pediatrician came in and my mother and father were in the room with us he told us he believed Jessica had down syndrome and we would know in about 2 weeks. Looking at me he said " I don't see any tears yet, mom" I was in a state of shock. Thinking back later I got angry at his comment. We had a very bad experience in the hospital and never even got our footprint sheet when we left the hospital. The nurse called us later and we went back to the hospital to match up our bracelets and check her out. They never even showed me how to clean her umbilical cord before I was discharged from the hospital. Being a new mother, I did not know how to do this. We finally got instruction from this nurse and filed a grievance with the hospital. I was told it wasn't because of her down syndrome that we were ignored but because of the day - it was New Year's Eve when we were discharged and they were "understaffed". Anyhow thinking about all this at home I became so angry thinking "if these people are in the medical profession and this is how They treat us how are we going to be treated by society?" I was appalled at the unprofessional, ignorant attitudes. But I think that just made me hold Jessica closer to me and realize early that I have to be her advocate.
There was really not much information on MDS. We later were told her kayotype test was negative for DS and then for Jessica's 2 week checkup the doctor listened to her heart and said "she had a heart murmur which is characteristic of a child with down syndrome." Well, I told him how we received news that the test was negative, and he said there was a mistake at the lab, we'll have the test results in the next week. My husband and I were on pins and needles, this was the longest week of my life. My mother had taken a week off work to help me out with the baby, and she called one night asking if I wanted her to come over and help and I just fell apart - started bawling on the phone. I was trying to be so tough that I felt guilty letting anyone help. My husband and I hadn't yet discussed the possibility of what the test might reveal. He told me that he felt angry at God like WHY US?! But then he said something that I KNOW is the truth, he said "Maybe God gave her to us because he knew we would Love her, NO matter what." The pediatrician phoned us at home and informed us, with my husband on one line and I on the extension, that our beautiful baby girl did in fact have Mosaic Downs Syndrome.
Jessica had an ASVD and saw the heart specialist every month for evaluation. She had repair done at 4 months of age and came through it with no problem . She reached all of her milestones right on time and it seemed that the muscle weaknesses that she had at an early age had disappeared. She is a little fighter. And she is now 7 years old, we've come a long way and been through a lot. But it has just made me love and appreciate her more. She is in a Learning Handicapped class and is very shy. She still has language delays and some learning obstacles but nothing that I feel we can't work through - so what if she didn't read in kindergarten? The most important thing is she knows she's loved and the triumphs that other people take for granted are that much greater for us. Please don't let anyone dash your hopes and tell you what your child can and cannot do.... ALL children can learn!!
Thanks for allowing me to share... Good luck with your baby!
When Jessica was born, I did also have a difficult delivery. She had shoulder dystocia and the doctor said she should have been c-section. Regardless of the difficulty, looking at my beautiful baby girl I fell in love. She was born at 10:53 p.m. and I kept her in my room that night holding her in my arms just marveling over her. The next morning the pediatrician came in and my mother and father were in the room with us he told us he believed Jessica had down syndrome and we would know in about 2 weeks. Looking at me he said " I don't see any tears yet, mom" I was in a state of shock. Thinking back later I got angry at his comment. We had a very bad experience in the hospital and never even got our footprint sheet when we left the hospital. The nurse called us later and we went back to the hospital to match up our bracelets and check her out. They never even showed me how to clean her umbilical cord before I was discharged from the hospital. Being a new mother, I did not know how to do this. We finally got instruction from this nurse and filed a grievance with the hospital. I was told it wasn't because of her down syndrome that we were ignored but because of the day - it was New Year's Eve when we were discharged and they were "understaffed". Anyhow thinking about all this at home I became so angry thinking "if these people are in the medical profession and this is how They treat us how are we going to be treated by society?" I was appalled at the unprofessional, ignorant attitudes. But I think that just made me hold Jessica closer to me and realize early that I have to be her advocate.
There was really not much information on MDS. We later were told her kayotype test was negative for DS and then for Jessica's 2 week checkup the doctor listened to her heart and said "she had a heart murmur which is characteristic of a child with down syndrome." Well, I told him how we received news that the test was negative, and he said there was a mistake at the lab, we'll have the test results in the next week. My husband and I were on pins and needles, this was the longest week of my life. My mother had taken a week off work to help me out with the baby, and she called one night asking if I wanted her to come over and help and I just fell apart - started bawling on the phone. I was trying to be so tough that I felt guilty letting anyone help. My husband and I hadn't yet discussed the possibility of what the test might reveal. He told me that he felt angry at God like WHY US?! But then he said something that I KNOW is the truth, he said "Maybe God gave her to us because he knew we would Love her, NO matter what." The pediatrician phoned us at home and informed us, with my husband on one line and I on the extension, that our beautiful baby girl did in fact have Mosaic Downs Syndrome.
Jessica had an ASVD and saw the heart specialist every month for evaluation. She had repair done at 4 months of age and came through it with no problem . She reached all of her milestones right on time and it seemed that the muscle weaknesses that she had at an early age had disappeared. She is a little fighter. And she is now 7 years old, we've come a long way and been through a lot. But it has just made me love and appreciate her more. She is in a Learning Handicapped class and is very shy. She still has language delays and some learning obstacles but nothing that I feel we can't work through - so what if she didn't read in kindergarten? The most important thing is she knows she's loved and the triumphs that other people take for granted are that much greater for us. Please don't let anyone dash your hopes and tell you what your child can and cannot do.... ALL children can learn!!
Thanks for allowing me to share... Good luck with your baby!
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