Sometimes, They're Wrong. Kayden's Story

Tell us about kayden, how old he is, and how he’s doing?

Kayden was born June 19th 2001 so in a little over a week he will be 7 years old. Kayden is doing very well he signs mom and dad and will say mama. He sits up on his own and will scoot and roll to get into everything. Kayden does not walk but will take steps when holding on to him.

2. When was kayden diagnosed with trisomy 18? Why did doctors operate on him?

At At birth kayden had a cleft palette { hole in the roof of mouth} and his tongue totally blocked his airway this was called pier roban so he was airlifted to the minneapolis childrens hospital where he was trached for breathing and they thought he might have trisomy 18 becuase of the signs so they did testing and two weeks later we were told.

At that time kayden also had malrotation his bowls and intestines were twisted the wrong way and they had to be repaired or it could kill him. that same day they placed a feeding tube in his belly At 2 months old he had hernia repair and 6 months old they did the jaw surgery to help his airway and at 1 year old we did cleft pallet repair although his is slightly still open. when kayden was almost 2 years old we were finally able to get the trach out.

A year later a developed 91 eppisodes an hour of sleep apnea so they removed his uvula and adenoids this took the whole problem away. From age 3 till now kayden has spent very little time in the hospital most things if any are planed as he gets older he seams to be stronger sick wise. Now this last year kayden has been having some unexplaind breathing problems from time to time out of no where he gets a mucus plug and starts to choke we have to bag him and some times we call 911 we have ran alot of test and no one knows for sure whats going on but decided to put him on seizure meds to see if by chance its a type of seizure as these were happening 1 time a month and now its been about almost 5 months and he has had 1 episode so looks so far like its working.

Some would say why would you put your son through all this surgery well my answer to that is if you had a older child who you all of a sudden found out needed surgery or had cancer most would not hesitate to do all they could for there child so wy should it be any difernt for our children born with problems? kayden was never in pain as the Dr's did a very well job at keeping him comfortable. I always thought of it this way if the Dr's gave me a 10% chance to live and a 90% chance to die i know i would fight for that 10% chance so how could i do any less for my child?

Kayden has always been happy and full of life. you cans see by his photos how true that is. the photos i sent you with the bars on his face that was 6 month sold 2 days after surgery him smiling and pulling on those bars.

3. Does kayden have a heart condition like Zoe does?

Kayden has a small vsd and upper super pulmonary stenoses. most cases kids need surgery to repair this as they grow the valve does not but thank god in kaydens case with him having the vsd with that it seams to be evening each other out and they dont think kayden will have to have heart surgery.

4. Do you feel like medicine has a correct stance dealing with trisomy 18? If not, how would you change it?

We have been very lucky here in Minnesota they have never treated Kayden any different and have always done what they would have done for any other child. But I do know that is not the case every where or for everyone in alot of places Dr's refuse to even feed kids with trisomy 18 they feel that doing anything for our children is a waste of medical practice.

Years ago everyone felt the same about downs kids{trisomy 21} parents were told to put them in institutions and not to do anything for them they were told these kids would never know them and will never do anything. Today we know this is not true downs kids do a lot and are very smart happy kids. Trisomy 18 has had no real research done since 1960's its sad to me that our kids are treated like the downs use to.

Most Dr's will also talk parents in to a abortion or fancy term inducing the pregnancy convinsing them this is the bast thing and that there kid would never survive the sad thing is they find families like mine later after being told kids dont live long. Here were i live there are 8 other families who have living happy trisomy 18 children all with in 3 hours of each other from age 2 to age 20 years old. Im not saying the road was easy but it was well worth it.

5. You have kept in touch with other families touched by trisomy 18. Is it helpful to stay in touch? What have you learned by staying in touch?

Yes i have kept in touched with many many familes with trisomy 18 children I even went to a soft conference when kayden was 1 years old. Staying in touch with the familes i do is so great becuase only they truly no what im feeling and going through we are each other support system and are there for each other no mater what.

In most cases when one of the trisomy 18 kids are in the hospital or somthing is really wrong we all take turns going to the hospital for support and calling. these families know and understand more then any of my family or friends could ever. They are truly the only ones ever who are really there for us.

6. Have you been in contact with families that have lost children?

Yes at first i thought it would be very difficult to talk with those parents not for the fear of kayden dying but in the fear of making them sad and upset that my son was still alive. My first real accouter was just before kayden turned 1 years old a Young mom like my self got a hold of me through kaydens web page she lived only 2 hours away and had just recently given birth to a little boy named Cole who was born stillborn.

Her husband and her came and got a hotel room near us so they could come meet kayden i was so nervous but WOW Jasmine was so strong and loving she fell in love with kayden and to this day we still get together and do things with each others families and we talk on the phone all the time she looks at kayden as a smack in the dr's and her families faces as they all wanted her to abort cole and she could not do that so even though cole did not make it she looks at kayden as this is why I did not induce becuase this could have been my child.

In our group of families that meet there are a handful of families that come to that have lost there child. Most recently we lost a wonderful little boy name Amos he was 2 years old. But when he was 4 months old he got sick and the hospital where they lived in Nebraska refused to admit him so Kelly the mom drove 3 hours away to Iowa there they admitted him but forced her to sign a DNR.

She found one of the other moms here in MN website who then gave me her contact info when i called Kelly her son Amos was on almost 4 days of no fluids not even through IV they were slowly killing him. With a few nagging phone calls to my one of kaydens Dr's at childrens and convinsing him that kids come from all over to be treated here and even though this was another state it was only about 7 hours aways 3 days later they had him airlifted here to MN were Amos got the help he needed and did very well was such a smiley and very aware little boy but almost 2 months ago Amos got sick and it took the best of him and he passed away 1 week from his 2 birthday.

I was there with Kelly as soon as i knew what was happening it was the hardest thing to go through i was feeling so guilty at that moment for having a son who was older and for giving her hope that her son too could live a long life and at that moment she looked at me and said Marta god is allowing kayden to live longer so you can continue to help families like mine that are not getting the help then she said if it was not for you I would have not gotten the 2 years with him that i did. That just broke my heart. Today almost 2 months later we still talk about every 3 days.

7. What advice can you give to all the people who are exposed to trisomy 18 for the first time?
Don't beleave everything your told. Dr's dont know everything please research and pray and talk to other families before making those big decisions. We were told kayden would not live and if for some reason he did survive the first year they had never heard of them living passed 3 or 4 and that he would basically be a vegetable and would not know us. Today kayden is so not like they told us im glad i listened to my gut and not the Dr's. I dont blame them as they just are not educated enough on trisomy 18 all the medical books are about a paragraph long and everything reads death. So that is my goal to change how things are dealt with I beleave our children should be treated as they would treat any other child and if familes want to have somthing done they should be able to and if not that's their choice too. I guess what i want people to know is that trisomy 18 does not always have to mean immediate death and sadness. We have had wonderful times with kayden and i know that things could one day change but i have those wonderful memories. For those of you who have trisomy 18 children still living I want you to know that because they are fragile does not mean they have to stay couped up we have never treated kayden any different kayden has been to disney world and 2 times to disney land he goes on rides and loves them he has been down water slides on my lap kayden has his own kids ride on hot wheel that comes with a parent remotecontrol that he rides in. My point is i have found that they love stimulation and the more you do with them the more they learn and show interaction. I think kayden does as much as he does becuase of all we have done with him. This year we made a sensory room for him and this month we are finishing up a handicap accessable swingset with ramp and toys down low for him to enjoy so he can play too. You will find you have to become creative. God bless and good luck to you all.

My favorite saying is "Life should not me measured by how many breaths we take but by how many moments that take our breath away. "