Kayden McClanahan

Kayden’s Story

Kayden-McClanahan (T18-13 tl)

 

“We are very honored and blessed to be his family.”

Kayden McClanahan, trisomy 18/13 translocation Baxter, MN, USA, 06-19-2001

Kayden was born June 19th 2001 weighing 4 pounds 11 ounces and 19 inches long.  We did not know ahead of time what was about to unfold in our life. I was only 24 years old and Frank was 28.  One night I was saying bed time prayers with my oldest son who was 2 1/2 at the time and when we were done I said a silent prayer of my own.  ”Lord please just let me go in to labor soon” as I was at the end and so uncomfortable.  I Kid you not with in a few minutes after bed time prayer my water broke.  We rushed into the hospital and by the time we got there the pain was so incredible.  About 20 minutes after arriving we learned i was already 9 centimeters and 8 minutes later kayden was born. Yes 28 minutes after getting to the hospital.  I had so much amniotic fluid that I flooded the room.The Dr did not make it for the birth and I could not hear Kayden crying. They whisked him over to the corner of the room and at this time I had no clue how little he was and that they were using the am-bu bag to breath for him so when i saw his little elbow flapping around I thought it was a limb and that they possibly were not letting me see him just yet because they didn’t know how to tell me he was missing part of his arm.  WOW was I wrong. Kayden was rushed into the next room where they tried like heck to place a breathing tube but couldn’t and instead had to put a plastic air away to keep his tongue down with blow-by oxygen.  They called for the helicopter to take him to children’s.

We  had yet to lay eyes on our sweet boy and we were being told that he had a cleft palette and pierre robin “small jaw”.  I couldn’t stand that we still had not been able to see him so we walked down the hall where i could here him crying,little did we know that would be the last time we heard that cry for a very very long time as with a trach you can not hear them cry.
I checked my self out of the hospital a couple hours later just after the Dr rounded and said I could leave. We drove the couple hours and were hit with the fact that he would have to have a trach for breathing as his tongue completely blocked his airway and the jaw and airway were just way too small. When kayden was 3 days old he had the trach placed and they came back in the room and told us that they would be able to do jaw distraction on him at 6 months old to help him get the trach out later and that he could have cleft pallet repair at 10 months old and everything would eventually be just fine. They also found a small VSD that day but assured us it was small. This prompted them to do DNA testing but did not tell us. Kayden was almost 1 week old before we even got to hold him for the first time because they needed him to stay in a coma state “still” it was so heart breaking.  Man was it heaven to finally hold our sweet baby boy in our arms.  I must have prayed a billion times for God to please help my baby live.
Two weeks later we were told next to Kaydens bed side that he had Trisomy 18 and it was not compatible with a long life span.  We were told that most kids do not live to birth and for those who do only 10% will make it past their 1st birthday. As I looked at my husband who was looking at the ground filled with fear and no words I felt so helpless and with out thinking went into mommy protect mode asking when can we bring him home then and can you take the feeding tube out of his nose and place it in his tummy.  The Dr looked at me and with out skipping a beat in between said, well he also has malrotation of the bowels and intestines and if we do not repair it for him it will cause a painful bowel obstruction and in return will kill him but since he has trisomy 18 do you not want to fix it? I couldn’t even believe he was saying in one hand this can and will kill him if you do not repair it however because your son has t18 should we just let this happen.We both looked and him and said we want this repaired for him and asked to have the feeding tube placed at the same time.

This is where our story changes as that Dr was the only Dr who ever made us feel like they did not want to treat our son.  Kayden is here today because he was given the chances any other child born healthy would be given. I thank God we didn’t know ahead of time that Kayden would be born with t18 as that would have caused so much more stress and Lord only knows how many things could have ended up differently had the Drs known ahead of time. Kayden went on to have a double hurnia repair at 2 months old and shortly later was able to come home for the first time but first we had to go through trach training so we could care for Kayden at home.  6 months old he had jaw distraction surgery, 10 months old and again at a year old  cleft pallet repair,and also ear tubes.
We tried nursing at home when kayden was first brought home but after about 2 months I had to turn them away and we have never looked back. Some people thought we were so crazy to care for this child with a trach while having a almost 3 year old to care for as well but the nursing around here just wasn’t any good and no one knew about trachs. We were to afraid to have some one care for him that we had to train so we felt it was better we just managed on our own. At first I was so overwhelmed when my husband would go to work but after a short while it all just came natural and I could never ask for it to be any other way.  My husband was and is such a great dad and has always jumped right in there to help and care for our sweet boy. We even gave birth to a third son when Kayden was 2.  Having Braden and Jaiden around has truly help make Kayden want to do more.
Just before his 2 birthday he was able to get his trach out, man was that a HUGE mile stone and we couldn’t have been any prouder of how well he was doing.  Drs were so amazed as Kayden was such a trooper, a fighter a true hero in very way.  At 3 years old he started having 91 episodes a hour of sleep apneia and had to have his adenoids and uvula removed. Around 5 years old kayden developed a cholesteatoma in his left ear and they had to remove that and a year later repeated the same surgery to the other ear.   All of this and you would never look at him and be able to tell he went through so much. Sounds like a lot but kayden was always kept comfortable and bounced back with in a day. The road at times has been hard and emotional I won’t lie but it sure has been worth every minute of it.  We were and are  so shocked at how amazing this little boy was in so many ways and how fast he could heal.  We know that if kayden had not been treated he would not still be here with us today.
Today I’m happy and thankful to announce that Kayden is 11 years old and it has been over 4 years since Iayden has even been in the hospital over night (knock on wood and pray please).  The only meds he is on is a low dose of keppra and prevacid. He has a PT and a teacher both come to the house every week and he also goes in to a center for PT,OT, Speech and cranial saccho therapy. Kayden can sign mom and dad,shake his head no/yes and will say momma which is music to my ears. Kayden loves to go on amusement rides and playing with his brothers and being on the go. Kayden has been to both Disney land and Disney world and played in the ocean and the sand in his hands, gone down water slides and even a small zip line course strapped on to me laughing the whole way. we have tried very hard over the years to never treat Kayden any different and to always include him in everything we do and because of these things his Drs, therapist, dad and my self  truly feel this is why he does so amazingly well.
He is a very viable and valuable part of our family.  Kayden has taught my husband, myself and our two sons Braden and Jaiden so much about true love, patience and strength when we thought we had none. His strength, fight, happy spirit and determination for life has made us stronger as a family. We love him so much and could never imagine our life without him. Over the last 11 years, I have seen so much discrimination against kids with Trisomy and it breaks my heart. Because of my love and fight for my own son, I started seeking out how to help other families also fight for their own children. I feel strong about our children deserving a chance at life, they should be treated as individuals and not as a diagnosis. It has become my passion to help raise more awareness and stop the way our kids are viewed. I want to help give HOPE to other families. Through this drive and passion to fight for my son, I have found a wonderful group of parents who feel as strong as I do and know that  together we can make change.  Because of Kayden, our family is closer and stronger. We are better people because he is in our life. His great big smile and the way he bats his long eyelashes in excitement every time we play with him proves his love for us as well!
We thank God for giving Kayden to us and trusting that we will take good care of him.  I could sit and ask why a hundred times but that will get us no where fast.  I do not believe that God “gives” us these kind of hard trials I believe that he gives us the strength to overcome the trials that come into our lives. Without him we would break.  So we live, take and cherish every day that we are given with our sweet angel. you should see his big blue eyes, they can make anyone melt,  all we have to do is look at him and he starts grinning ear to ear and his big blue eyes are glowing.  He is so in love with us just as we are with him.  I must admit I admire and love to see the bond he shares with both his brothers, all they have to do is walk past him even and his eyes are glued to them with love. I’m so very proud of both Braden and Jaiden for how wonderful they are with him, they know everything there is to know about Kayden, they help with him and they wrestle and play with him always trying to include Kayden in one way or another. They truly love everything about Kayden. We pray that Kayden has many, many more years to be here with us in our care.  We are very honored and blessed to be his family.

 

www.trisomyfamilies.org

Kayden McClanahan8 Kayden McClanahan7 Kayden McClanahan6 Kayden McClanahan5 Kayden McClanahan4 Kayden McClanahan3 Kayden McClanahan2 Kayden McClanahan1We are very honored and blessed to be his family.