Butler, Pennsylvania
Hello! My name is Barb and I would like to tell you the story of the birth of my little miracle Jonas Robert Martz. Jonas was born on 11/01/00, just one week after my 36th birthday. On the night of Halloween, I had taken my 5 y.o. son trick or treating and had gotten him home and in bed. I began to think that I had not felt my unborn baby moving much that day and decided to sit down and pay close attention to how many movements I felt in an hour's time.
Jonas had been a very active baby, so it was odd that he was not kicking all around as usual. After 6 hours of concentrating on little else, I had not felt a single movement. It was 3:00a.m. and I could not get any peace about this inactivity. I woke my husband Bob and told him I was going to go to our nearby hospital to be put on a fetal monitor just to reassure myself. He wanted to go with me but I insisted that we not wake up our 5y.o. and scare him. I thought I was being paranoid and that I would be home in a matter of an hour or two. Once I was at the hospital, they were unhappy with the baby's low heart rate which was hovering around 90. Bob came in to the hospital and a doppler ultrasound was done. This showed that I had a blood clot in one of the arteries in the umbilical cord. Soon I was being rushed to Western PA Hospital. in Pittsburgh about 60 miles away in an ambulance. We were told by the high risk OB-GYN that the baby's life was in grave danger because the blood clot was leading right to the baby's aorta, so an emergency c-section was performed post haste. Jonas was born 7 weeks premature and weighed 4lb.5oz. and was able to breathe on his own at birth. He went to the NICU for preemie care, but was just perfect. The doctors said that Jonas was a real living breathing miracle, and that they had never caught that problem of a thrombus in the umbilical cord in time to save the baby's life. The doctors and nurses told me that I was a "hero" for saving my baby, and wanted to know what made me go in to the hospital. I am no hero, I prayed to God to for my unborn baby everyday of my pregnancy and so when He spoke to my heart that there was something not right I had to listen. To God be all the glory for this miracle!
For the first ten days of Jonas' life we marveled at how perfect he was. We thought we had really beat the odds. On that tenth day my husband returned to work on a 12 hour shift and my Mom took me to Pittsburgh (one hour from home) to see my doctor for staple removal and also to visit Jonas. The daily trips had taken their toll on the healing process following surgery, but I could no sooner stay away than chop off my arm. A nurse came in that day while we were with Jonas and casually told me that a cardiologist was going to see Jonas that evening after his office hours to be sure that the blood clot had not caused any problem like an abdominal aortic aneurysm or anything. "Just to be sure".
I was in considerable misery that day and decided to go home and call back down to the NICU and speak to a doctor about the results in the evening. I had about a 9 hour wait to be there when the cardiologist came and I couldn't physically do it. So from home I phoned the hospital about 6p.m. The neonatologist said he wanted to talk to Bob & I both together. Bob was not even home from his 7-7 work shift yet. I told the doctor that I would call back when my husband got home. Bob and I decided to have a conference call with the doctor instead of going back to Pittsburgh that night. The doctor first told us that Jonas has Atrioventricular Septal Defect (A-V Canal Defect) of his heart. This is when there is a hole between the upper chambers of the heart and a second one between the bottom two chambers of the heart. Then the doctor told us that the finding of this specific heart defect confirmed something they had only suspected for a few days, that our son had Down's Syndrome! Wow! We were floored. How could ten days pass without us even suspecting a thing? How could such a diagnosis take the doctors so long to come up with? It didn't make sense, but we believed the doctor knew what he was saying or he wouldn't be saying it. I told Bob as I hung up the phone, "God wants this dear boy here for sure or he would not have even made it this far."
Then we broke the news to our big family and best friends and then went to sleep crying. I woke in the morning with tears running down my face. I never knew before that you can cry in your sleep. When I got up and got ready to go see Jonas I began to feel such a need to be with my son. When we arrived in the NICU there were the doctors waiting for us and an angel nurse named Sandra H. in Pod #3 where Jonas was, waiting to offer us hugs and caring. All I could still think about was getting scrubbed in and getting my arms around my child. As soon as I had Jonas in my arms all the things I had spent the night crying about melted away like wet cotton candy. He still was the same perfect child I had been loving for 10 days, he still was a blessing in our lives, and I still loved him so much that it hurt. We were surrounded by family and friends who also drew strength from seeing Jonas and remembering what a real blessing he is. On our way home that evening, my quiet and loving husband said to me, "I get so much peace just holding Jonas, everything is going to be fine". I have never felt hopeless or questioned Why? since that moment.
It was three more days until we had the testing back to confirm without a doubt that he had Trisomy 21. When the doctor told us that the tests did reveal Trisomy 21, but the rare form known as Mosaic Down's Syndrome, we felt like we had more hope than we had for days. It also explained alot about why it was so difficult to tell that Jonas had it. The physical traits of D.S. that he has are the creases on his hands, and a slightly larger than normal space between his big toes and his other toes on each foot. His right ear is slightly flapped, but the left one is normal. The doctor told us that it was possible that Jonas could be as high functioning as a normal child or that he could have as much impairment as a child with 100% Down's Syndrome. Jonas has 30% affected cells and we know that one area that has been really affected is his heart. Like everyone else who has a child with MDS, we have to wait to see what other things we may have to deal with as time passes. So far, Jonas has really exceptional muscle tone, is very alert and aware of his surroundings. Our pediatrician says that if he did not know Jonas has MDS, he would never suspect it. Right now we are trying to keep him away from winter illnesses and loving him day by day. He weighs slightly over 7 lbs. at 3 1/2 months old. He has been enrolled in the Early Intervention and Infant Stimulation programs. They come to the house each month to evaluate Jonas and give us helpful information about what we can be doing with him.
The heart problem is our greatest worry at this time. The cardiologist has told us that there is no physical possibility of these holes closing without surgery. This has not stopped us from praying for a miracle, because we know God can do things outside the physical realm. Right now Jonas' heart is strong and he does not require any medication to fight off congestive heart failure. We expect the open heart surgery to take place between 6-12 months of age. I try not to think about the heart surgery too much. I don't know how you hand your precious one over to the doctors for that operation!
I had all the tests offered to me during my pregnancy such as the triple test, amnio, CVS, etc. and I refused them all. I am very glad in retrospect that I did not know about Jonas' problems ahead of time. I would not have even considered killing my child, and the worry would have been terrible. I know we would have imagined things to be so much worse than they have turned out to be. I also treasure those first ten days of his life when I fell hopelessly in love with him without my feelings being mixed up with thoughts of D.S. and heart deformities. It is not that I love him less now that I know, but I have to admit that there has never been a day when I forgot about it completely since we were told. But it helps me to let my mind wander back to the days before the diagnosis once in awhile.
Bob and I talked about the name "Jonas" as a possibility for a couple of months before Jonas was born. We chose the name after Dr. Jonas Salk creator of the first polio vaccine. When Jonas came almost 2 months early we still hadn't decided, but after his emergency entrance into the world, it seemed really appropriate to name him after a man who saved so many children.
We are also the proud parents of a 5 1/2 year old Kindergartner named Walker. He is a whole different story! He is reading and comprehending fully at a 5th grade 4th month level. God bless each and every one of you, and your little miracles!
For the first ten days of Jonas' life we marveled at how perfect he was. We thought we had really beat the odds. On that tenth day my husband returned to work on a 12 hour shift and my Mom took me to Pittsburgh (one hour from home) to see my doctor for staple removal and also to visit Jonas. The daily trips had taken their toll on the healing process following surgery, but I could no sooner stay away than chop off my arm. A nurse came in that day while we were with Jonas and casually told me that a cardiologist was going to see Jonas that evening after his office hours to be sure that the blood clot had not caused any problem like an abdominal aortic aneurysm or anything. "Just to be sure".
I was in considerable misery that day and decided to go home and call back down to the NICU and speak to a doctor about the results in the evening. I had about a 9 hour wait to be there when the cardiologist came and I couldn't physically do it. So from home I phoned the hospital about 6p.m. The neonatologist said he wanted to talk to Bob & I both together. Bob was not even home from his 7-7 work shift yet. I told the doctor that I would call back when my husband got home. Bob and I decided to have a conference call with the doctor instead of going back to Pittsburgh that night. The doctor first told us that Jonas has Atrioventricular Septal Defect (A-V Canal Defect) of his heart. This is when there is a hole between the upper chambers of the heart and a second one between the bottom two chambers of the heart. Then the doctor told us that the finding of this specific heart defect confirmed something they had only suspected for a few days, that our son had Down's Syndrome! Wow! We were floored. How could ten days pass without us even suspecting a thing? How could such a diagnosis take the doctors so long to come up with? It didn't make sense, but we believed the doctor knew what he was saying or he wouldn't be saying it. I told Bob as I hung up the phone, "God wants this dear boy here for sure or he would not have even made it this far."
Then we broke the news to our big family and best friends and then went to sleep crying. I woke in the morning with tears running down my face. I never knew before that you can cry in your sleep. When I got up and got ready to go see Jonas I began to feel such a need to be with my son. When we arrived in the NICU there were the doctors waiting for us and an angel nurse named Sandra H. in Pod #3 where Jonas was, waiting to offer us hugs and caring. All I could still think about was getting scrubbed in and getting my arms around my child. As soon as I had Jonas in my arms all the things I had spent the night crying about melted away like wet cotton candy. He still was the same perfect child I had been loving for 10 days, he still was a blessing in our lives, and I still loved him so much that it hurt. We were surrounded by family and friends who also drew strength from seeing Jonas and remembering what a real blessing he is. On our way home that evening, my quiet and loving husband said to me, "I get so much peace just holding Jonas, everything is going to be fine". I have never felt hopeless or questioned Why? since that moment.
It was three more days until we had the testing back to confirm without a doubt that he had Trisomy 21. When the doctor told us that the tests did reveal Trisomy 21, but the rare form known as Mosaic Down's Syndrome, we felt like we had more hope than we had for days. It also explained alot about why it was so difficult to tell that Jonas had it. The physical traits of D.S. that he has are the creases on his hands, and a slightly larger than normal space between his big toes and his other toes on each foot. His right ear is slightly flapped, but the left one is normal. The doctor told us that it was possible that Jonas could be as high functioning as a normal child or that he could have as much impairment as a child with 100% Down's Syndrome. Jonas has 30% affected cells and we know that one area that has been really affected is his heart. Like everyone else who has a child with MDS, we have to wait to see what other things we may have to deal with as time passes. So far, Jonas has really exceptional muscle tone, is very alert and aware of his surroundings. Our pediatrician says that if he did not know Jonas has MDS, he would never suspect it. Right now we are trying to keep him away from winter illnesses and loving him day by day. He weighs slightly over 7 lbs. at 3 1/2 months old. He has been enrolled in the Early Intervention and Infant Stimulation programs. They come to the house each month to evaluate Jonas and give us helpful information about what we can be doing with him.
The heart problem is our greatest worry at this time. The cardiologist has told us that there is no physical possibility of these holes closing without surgery. This has not stopped us from praying for a miracle, because we know God can do things outside the physical realm. Right now Jonas' heart is strong and he does not require any medication to fight off congestive heart failure. We expect the open heart surgery to take place between 6-12 months of age. I try not to think about the heart surgery too much. I don't know how you hand your precious one over to the doctors for that operation!
I had all the tests offered to me during my pregnancy such as the triple test, amnio, CVS, etc. and I refused them all. I am very glad in retrospect that I did not know about Jonas' problems ahead of time. I would not have even considered killing my child, and the worry would have been terrible. I know we would have imagined things to be so much worse than they have turned out to be. I also treasure those first ten days of his life when I fell hopelessly in love with him without my feelings being mixed up with thoughts of D.S. and heart deformities. It is not that I love him less now that I know, but I have to admit that there has never been a day when I forgot about it completely since we were told. But it helps me to let my mind wander back to the days before the diagnosis once in awhile.
Bob and I talked about the name "Jonas" as a possibility for a couple of months before Jonas was born. We chose the name after Dr. Jonas Salk creator of the first polio vaccine. When Jonas came almost 2 months early we still hadn't decided, but after his emergency entrance into the world, it seemed really appropriate to name him after a man who saved so many children.
We are also the proud parents of a 5 1/2 year old Kindergartner named Walker. He is a whole different story! He is reading and comprehending fully at a 5th grade 4th month level. God bless each and every one of you, and your little miracles!