Matt Nielsen’s Story
Matthew Steven Nielsen was born on February 22nd 1993. The doctors determined that Matt had a chromosomal defect. He had/has trisomy 21 which means that he has 3 chromosomes instead of 2 on his 21st chromosome. Matt was taken home to a very loving family who was so excited to have his special spirit in their home. When Matt was born the doctors told my parents that he had some heart defects that were very common in Down Syndrome kids and that he would have to go through surgery when he was older and stronger.
Matt was taken into surgery at 9 months for Atrioventricular Spetal Defects or also known as a hole in his heart. AVSD are a very common in children with Down Syndrome. Matt had 2 surgeries on his heart and did very well with each. After his surgeries he came home and we thought that would be the end of hospital stays, little did we know it was just the beginning.
Matt is/was developmentally slower than a regular child due to his Down Syndrome. He crawled slower, talked slower, and hit all of his milestones later than most. He eventually was able to walk with a walker, but still needed some assistance. Matt was still progressing slower than most Down Syndrome kids, but my parents thought that it was just Matt and he was taking a little longer than most with is very relaxed personality.
The picture below shows how small Matt was. Matt is on the left and Brayden my other brother on the right. Matt and Brayden are 3 years apart. Brayden is around 1 years old and Matt is around 4 in this picture.
When Matt was 4 years old, he was jumping on the trampoline with cousins when the right side of his body went limp. My mom couldn’t get him to move his right arm so she took him to the emergency room with what she thought was a broken arm. After an x-ray didn’t show a broken bone, the ER sent them home and said he probably was just going through a phase. Matt still wouldn’t move his arm so he was taken back 4 different times for X-Rays. He was x-rayed for all sorts of different things, his lower arm, upper arm, shoulder, etc. On the 4th time my dad was quite frustrated. He asked them to see if possibly his shoulder was dislocated while they were moving him. The doctors then took Matt back for a CT scan. While Matt was in the machine he moved (you are supposed to hold very still so the right parts of your body can be scanned). What most would be frustrated about became something that gave my parents so many answers. The doctor currently on Matt’s case in the ER at Primary Children’s was looking at Matt’s x-ray in the hall way when a neurosurgeon came up and asked to see the it. He looked at the ER doctor and said, “Look up at the top, that is a tumor”. He asked where the child was and the doctor stated that he was back in the room. Matt was then sent home and the neurosurgeon took his x-ray into a team meeting to look at it. (At this time it is around 5AM) My parents were then called and told to rush Matt up to Primary Children’s for emergency life threatening surgery (the doctors at this time did not know the severity of the tumor). My parents then rushed their sweet blue eye, blonde haired little boy to the hospital. The doctors did a full CT scan of Matt’s entire body which revealed that he had a brain and spinal cord tumor. My dad was in the room with the Dr.’s when they saw the x-ray. (The doctor on Matt’s case was a world-renowned surgeon. He was the doctor who separated the Utah Siamese twins.) They stated “OH MY GOSH!” The tumor is shaped like a dumbbell! It is fat up in his brain, skinny through his neck and spinal cord and then went fat down his back and spinal cord. The doctors stated to my parents that they did not know if the tumor was fatty or cancerous and they would have to determine that when they got in there. Matt was in surgery for around 10 hours. During surgery the doctors came out to my parents and let them know that the tumor was a fatty tumor. They next explained the tumor as gooey slime that was wrapped around a bunch of wires and they couldn’t cut the wires or Matt would lose motor functions. In the 10 hours of surgery the doctors only got less than 10% off the tumor out, but reduced enough pressure off of his brain stem and spinal cord.
Matt was in the hospital for a few weeks following the surgery in the Pediatric Intensive Care Unit (PICU). The day before Matt was to go home he was moved out onto the floor. My sweet dad was staying the night with Matt when all hell broke loose. Matt crashed. He stopped breathing. His SAT’s dropped and his sweet face was slowly turning purple. My dad called for help and the doctors and nurses rushed in. They intubated him to keep his lungs open while they figured things out. The doctors then did extensive testing to find out that during his brain and spinal cord surgery the nerve to his diaphragm was severed paralyzing his left diaphragm. (Your diaphragm is the muscle the pushes your lungs up and down to breathe.) In the x-ray Matt’s diaphragm was up to his nipple. He was rushed back into PICU until he could undergo another surgery. Matt was then taken into surgery for a tracheostomy (a hole in your throat that bypasses your nose and mouth to breath) so he could be on a ventilator life long. Matt was also given a Gastrointestinal Tube (G-Tube) because many kids with trach’s don’t pass their swallow studies to eat like we do. Matt however passed his test but choses not to eat. He is fed with formula, but drinks flat warm Diet Coke. Yes you read that right, flat and warm. We can also get him to lick Doritos or Tortilla chips on occasion.
From the point of Matt’s first surgery until he was on a ventilator he was at Primary Children’s for 3 1/2 months. During this time Matt had amazing visitors come and see him at the hospital including the Utah Jazz players, Hockey players, Harley Davidson Riders, and so many more!
When he came home from the hospital and was home for only 2 short days when he crashed at home and was life flighted back to Primary Children’s. Matt spent another couple weeks at the hospital and then came home and was life flighted again and he has been home ever since. Matt was/is the strongest person, fighting with everything he has every single day to stay here on this earth with my family.
Matt has been home now for 16 years! When Matt was sick at the hospital they gave my parents the life expectancy of only a couple years and he has by far surpassed that. My family makes sure to adapt everything we do so Matt can participate with us. Matt has done so many things that people would have never thought he would be able to do. My parents have done an amazing job of making sure that Matt has an amazing quality of life. They spend hours adapting Rangers for his vent to fit, fitting cardboard around his wheelchair so he can be a true fireman, figuring out how their little man can go skiing or swimming, and so much more. None of this is easy, but they just want him to do the things that every other little kid gets to do.
Matt lives a very healthy life considering all of his medical concerns. He just wants to be treated just as you are. He doesn’t want to be babied, or treated like he is special. Quite frankly if you ask him if he is special needs or if there is something wrong with him he will look at you like your stupid and tell you “NO!”. He wants you to be his friend, not be afraid of him. We know that he is a lot to look at and you don’t know if you can touch anything in fear of hurting him, but please don’t let that scare you away. He is not as fragile as he looks, trust me on that.
All that Matt and we want is for him to be treated just like you would want to be treated. You can stare at his medical equipment wondering what it all does, I would too, please do it with a smile on your face. Trust me, if you can look past all of his tubes, beeps, and wheelchair, you will see an amazing little boy that will change your entire life!
My parents are the most remarkable people I have ever met. They take such amazing care of him. He is not easy to get ready in the morning as he fights you like a regular teenager to go back to sleep, to lift him to change his diaper, put his pants on, or move him to his wheelchair. My mom gets him ready every single day. My dad spends countless hours away from my mom taking Matt to ReAl games and Jazz games when he should be working on other things. They center their lives around Matt and that to me is what has made Matt’s quality of life so amazing. Matt loves them both so much!! He gets angry with them both, like a typical teenager, but is beyond grateful to each of them and tells them thank you and he loves them a million times a day. I look up to my parents so much. They could have been bitter about having this sweet special needs kids to take care of life long, but they have the most amazing attitude that they get to have a miracle in their home everyday to learn and grow from.
Matt is my greatest blessing in my life. He has changed me. He has made me be grateful for so many things that I have taken for granted and to truly realize that life is precious. He is my best friend and my hero. I love him more than words. I am so grateful to be his sister and that I get the opportunity to learn from him everyday. He always keeps a smile on my face, worries about me daily just as I worry for him! I watch him bring so much hope and light into people’s lives and I hope one day I can spread half the light he does! He is the most positive person I have ever met. He never ever complains when he has so much to complain about. If you ask him he is never tired, never hurt, and never sad. He is such an amazing example to me and everyone that lets his special spirit into their lives. I wish I could give everyone a sliver of Matt to put in their hearts, I promise you your heart will never be the same!
If you have any questions or anything feel free to comment below or email me at danimarieblog@gmail.com. No questions are sensitive to us so feel free to ask anything that you would like to know. Thanks so much for reading about Matt and wanting to get to know him.
