North Attleboro, Massachusetts
Matthew Paul Mangili was born on August 3, 1998 about 4 weeks prior to his due date. He weighed in at 6lbs, 0 ounces and the doctors said he was perfectly healthy and we took him home 48 hours later. He was absolutely precious!! And although Matthew had some trouble breast feeding the first few weeks, he gained a lot of weight in the next few months, thanks to the formula he was eating. For the next several months, Matthew put on weight and grew as all mainstream babies do. His checkups were always great, and other than an ear infection and respiratory infection, he was otherwise perfectly "normal" and healthy.
At his 11 month checkup, our pediatrician said he was concerned with Matthew's development. We were very shocked and confused by his comments at first. But at the time, Matthew was not crawling or standing up yet. We thought he was just lazy! Two weeks later, Matthew went back to have his ears checked again and the doctor thought he was doing just fine. We were temporarily relieved. So the next few months we watched him closely and saw nothing out of the ordinary, and actually the more time we spent with him, the more he would do developmentally. He was growing into a little boy that was always smiling and perfectly happy playing or eating!
Just before his 14 month checkup, Matthew developed another bad ear infection. And at this point, we knew it was affecting his hearing as well as his speech. We got his ear infection cleared up and had to take him back two weeks later for his three month checkup. My wife, Jane, took Matthew on that Friday and the phone call I got from her changed our lives forever! She told me that the doctor wanted Matthew to have a chromosome analysis because he thought Matthew might have Down Syndrome. My wife and I both broke down in tears.
My first reaction was "How can that be...the doctor has seen Matthew for 14 months and there never was a hint or inclining that he could or may have DS. Why now?!?". He said that each time he saw Matthew, he saw some facial characteristics of DS. But, as he explained, Matthew did NOT have a crease across the palm, or small mouth, or extra fold under the eye or the large space between the toes. What he did see was that Matthew had a slightly flat back of the head (but Jane's father has the same shape and he's a Harvard grad in Biology!), and slightly smaller ears. More noticeably was Matthew's development: he was not walking or crawling yet. And as he explained that even though he was still in the normal range, it was getting close to the later part of the norm.
We both went online and began our search for information on Down Syndrome and what it meant and what the characteristics were and such. However, most of all we read convinced us that he was not a child with DS. We went home that night, looked at pictures and saw nothing that indicated DS, but a smiling and otherwise perfectly happy baby!! He loved to have his picture taken, cause he is such a ham - just like his Daddy!!
And as if Matthew knew what was going on, the very next day he crawled for the very first time!! We were so excited! But that wasn't all...he also, on the same day, started to feed food to himself!! It was like he had held out all that time and then decided to blossom! In the meantime, we had to take Matthew for the blood test and wait two weeks for the results - results we would get on October 26th, 1999.
We decided not to tell anyone except for our bosses at work, because we knew we may need some time off if it was positive. In a nutshell, the next two weeks were simply unbelievable...Matthew started crawling, pulling himself up to a standing position, feeding himself and as his ears cleared up, responding to our questions!
One week later, my father died suddenly. It was awful...everything happening that whole week was like a bad dream. I never did tell him about the test and but somehow I think he knew! Even though the events of that week took our minds off the test results, it quickly came to a reality on Tuesday, October 26th. The doctor told us that Matthew had mosaic down syndrome. He was 30% affected and that time would only tell what things would be a challenge for him. We now know why he has some trouble with his walking and with his speech. So we are trying to find out all we can and to hear from people with similar stories so we can learn how to give our son the absolute BEST of everything! Because that's what he deserves and that's what he is going to get!
Matthew is our first. We aren't sure if we should have another baby, but if we do, we hoped to be as blessed as we have been by Matthew!! He gives us joy as no one else can, either by his laughter, his smile or even the way he sleeps. The unknown is the biggest challenge to overcome right now, but the love we share with him will get us through anything God has in store for Matthew!
Just before his 14 month checkup, Matthew developed another bad ear infection. And at this point, we knew it was affecting his hearing as well as his speech. We got his ear infection cleared up and had to take him back two weeks later for his three month checkup. My wife, Jane, took Matthew on that Friday and the phone call I got from her changed our lives forever! She told me that the doctor wanted Matthew to have a chromosome analysis because he thought Matthew might have Down Syndrome. My wife and I both broke down in tears.
My first reaction was "How can that be...the doctor has seen Matthew for 14 months and there never was a hint or inclining that he could or may have DS. Why now?!?". He said that each time he saw Matthew, he saw some facial characteristics of DS. But, as he explained, Matthew did NOT have a crease across the palm, or small mouth, or extra fold under the eye or the large space between the toes. What he did see was that Matthew had a slightly flat back of the head (but Jane's father has the same shape and he's a Harvard grad in Biology!), and slightly smaller ears. More noticeably was Matthew's development: he was not walking or crawling yet. And as he explained that even though he was still in the normal range, it was getting close to the later part of the norm.
We both went online and began our search for information on Down Syndrome and what it meant and what the characteristics were and such. However, most of all we read convinced us that he was not a child with DS. We went home that night, looked at pictures and saw nothing that indicated DS, but a smiling and otherwise perfectly happy baby!! He loved to have his picture taken, cause he is such a ham - just like his Daddy!!
And as if Matthew knew what was going on, the very next day he crawled for the very first time!! We were so excited! But that wasn't all...he also, on the same day, started to feed food to himself!! It was like he had held out all that time and then decided to blossom! In the meantime, we had to take Matthew for the blood test and wait two weeks for the results - results we would get on October 26th, 1999.
We decided not to tell anyone except for our bosses at work, because we knew we may need some time off if it was positive. In a nutshell, the next two weeks were simply unbelievable...Matthew started crawling, pulling himself up to a standing position, feeding himself and as his ears cleared up, responding to our questions!
One week later, my father died suddenly. It was awful...everything happening that whole week was like a bad dream. I never did tell him about the test and but somehow I think he knew! Even though the events of that week took our minds off the test results, it quickly came to a reality on Tuesday, October 26th. The doctor told us that Matthew had mosaic down syndrome. He was 30% affected and that time would only tell what things would be a challenge for him. We now know why he has some trouble with his walking and with his speech. So we are trying to find out all we can and to hear from people with similar stories so we can learn how to give our son the absolute BEST of everything! Because that's what he deserves and that's what he is going to get!
Matthew is our first. We aren't sure if we should have another baby, but if we do, we hoped to be as blessed as we have been by Matthew!! He gives us joy as no one else can, either by his laughter, his smile or even the way he sleeps. The unknown is the biggest challenge to overcome right now, but the love we share with him will get us through anything God has in store for Matthew!
RSS Feed
