Nick

© Mowat-Wilson Syndrome Foundation

Hi my name is Jasmin and this is the story about my wonderful son Nicholas.  Nicholas was born in August of 2004. He was the easiest of my two babies to carry. I had the most normal pregnancy with him, it was almost perfect. I didn’t know that he was in there.  I was told I was having a girl. I didn’t know about him until he came out. When I saw him the first time I saw him upside down because they put him on me.  At this point I still though it was my daughter who I had named and fallen in love with for five months. The first thing I saw was what I thought were her privates.  When I saw I knew something was wrong.  I asked what was wrong why did it look like that?  At that moment they took him away from me not saying anything just surrounding him.  All I saw was white coats and my husband trying to see what was going on.  I was twenty at the time and in total shock! After a few they gave me the baby and tried to explain to me that they weren’t sure as to the sex of the baby,  meanwhile I have this baby in my hands  that looked very much like a boy,  very little and fragile,  he couldn’t even feed.  I was told by the nurse that when my family would call I shouldn’t say what the sex was so that I wouldn’t confuse them  until we  find out exactly the truth.  I was in a total state of shock. I cried and cried, not because of the baby,  but because I didn’t understand all of what was going on.  I will say that I was sad about the baby, I mean  I even had a name for her.  It took me a while to even go in the closet where her stuff was and exchange it, but that all happened when I got home.  In the mean time I was worrying about my new son and the fact that he couldn’t suck. Me and my husband would feed him with a syringe full with milk and a little tube and our finger to teach him to suck. The weeks that we spent there were rough. He had all kinds of test ultrasounds to look for any signs of  uterus, fallopian tubes, and stuff like that. I think they thought he had ambiguous genitalia.  It wasn’t until I met his urologist the night he was born that she mentioned that it was possibly hypospadias stage 4, which was pretty bad. All other tests came back good and we were only waiting for the chromosome test, which take about a week and we got to take him home with no name and not telling anyone except our parents that he looked like a boy, but we weren’t exactly sure. I had a feeling from the first time I saw him that he was in fact a male and that this was just what the doctor said it was. We were glad to find out that he was a male and that our journey with our son was just beginning. Nicholas had his first surgery when he was six months. At this time I had suspicion as to why he wasn’t doing much. At eight months is when I told his doctor, look he is not doing anything, please give me the number to birth-3.  I called myself and when they came to evaluate Nick we had proof of my suspicions that he was delayed and it was pretty bad. Through the course of the time he was in the program he had multiple surgeries and lots of procedures.  Nicholas’ skin is very thin and doesn’t heal well.  His repairs would break down so they would have to take it down let it get better and then try again.  It wasn’t until Nick got hyperbaric treatment that it finally worked.  I thank his doctor every day that I see her work  and just for his sake as a boy.   You would never be able to tell he wasn’t born that way.  At twelve months Nick had his first seizure and they have continued.   They have gotten worse over the years but his doctor and I try to keep him from having them.  The doc gives the meds and I do my part to keep him in when it’s too hot and from watching things that are two flashy. Nicholas had his worse seizure at the age of two when we almost lost him.  He was in a medically induced coma for three days to stop the seizure.  He had an infection from the urinary reflux that he has.   He was on a cooling machine to keep the fever down and in the ICU for 4 days and then transferred to the children’s hospital for about four weeks longer.  The hospital was our home away from home for two years of Nick’s life and through this all he was the best child.  He never cried unless there were needles involved.  I never left his side.  I slept ate and bathed there for the whole two years as did my husband.   We thank God for giving us the chance to be the ones who love and take care of him.  I try every day to give him the best quality of life. Today Nicholas is a five year old boy with the biggest smile you’ve ever seen. He is very happy and for the most part seizure free except for the occasional ones.  He is in kindergarten this year.   He loves to interact with other children and adults as well.  He is very friendly.  He doesn’t speak but can show you and tell you what he needs.  For the most part I just know already.  He does sign more and understand most of what I’m saying so I ask him a lot of questions like are you hungry, sleepy, etc.  I also tell him everything as well.  Like we’re going here, let’s gets dressed, give me your foot, let’s change your diaper, you did this or you did that.  Nicholas loves music. Nicholas’ two favorite things are McDonalds and Chuck E Cheese.  When he sees we’re getting there he goes wild making noise, he can probably tell you how to get there.  Nicholas is very smart and aware of his surroundings.  He recognizes familiar faces and he’ll remember where we are going after a few time’s there like I’ll say we are going swimming, which I take him to aquatic therapy once a week and he loves it.  When we get there he wheels right in and, if I let him, right into the pool.  He is in a half mainstream program and half life skills at school.  He’s there the whole day.  He gets his therapy at school PT, OT and speech. I’m in the process of  taking him out of there to go to a private school but it’s hard.  I wish I had the money to just put him were I think is best not where the state says.  It’s unfortunate that people with less resources have to suffer.  I just want to say that Nicholas wasn’t given much of a fighting chance from people when he was born, but he continues to prove them wrong every day even by the littlest things he does.  I love him to death  and so does our entire family, especially his  little sister  Melanie  who is eight months.   She thinks he is awesome.   I love to see them interact.  I just keep a close eye because Nick has very fast hands and doesn’t realize his own strength.  Also his lack of control plays a part, but he means well.  He can’t walk the best, but his braces help with that.  I am happy to have been given a chance to share our story and life with MWS.