Friday, March 18, 2011

Trisomy 18 awareness

March is Trisomy awareness month.Today the 18th is for trsiomy 18. My son kayden who will be 10 this June was born with trisomy 18.

a Trisomy is when the chromosomes do not divide correctly, and there is an extra copy of a chromosome that was not sloughed off.  So instead of one "X" for the pair of chromosomes affected, it is more like “XI”.  Chromosomes are numbered, and the number of chromosome that did not divide properly is how the Trisomy is named, as well as being known for the person who discovered the Trisomy, also called a “Syndrome” (syndrome meaning a pattern of symptoms, and in these cases, traced directly to the cause).  The most common Trisomy is 21, which is Down's syndrome.  After that is Trisomy 18, also called Edward's Syndrome, then Trisomy 13, also known as Patau's Syndrome.  Most other Trisomies are not compatible with life, and are often miscarried or stillborn.

Below is Life from early on to now with kayden. It is rather long but well worth the read to get to know life with kayden and how much he truly has blessed us as a family.

Kayden was born June 19, 2001. We had no idea before he was born that he had anything wrong with him. Immediately after he was born, the doctors took him off to the side. Everything seemed fine except that I thought it was taking a long time for them to hand him to me. They called another doctor in, and I could see his little elbow in the air and because I didn't know he was only 4 pounds 11 ounces I thought it looked like a limb and that he was missing part of his arm and that they just didn't know how to tell me, if only that was the case if that was the only thing we would have to face but that's not what was wrong. I then could see them using the Abeu bag on him as if he wasn't breathing. It was discovered that he had a smaller jaw that caused his tongue to block his airway. They had to pry his mouth open with a piece of plastic and tape it to his face. While doing that they also found a cleft palate. Kayden was taken by helicopter to Children's Hospital, in Minneapolis. We arrived a few hours later and were told that he had Pierre Robin, which is when the jaw does not grow all the way forward, and that he would need a trach in order to survive. They told us that his jaw would be fixed by six months of age and the cleft by one year, and then everything would be fine. A couple of days later, we were told that Kayden had a VSD, a small hole in the heart. We were also told not to worry because it would go away on its own. So, even though we were very sad for our child, we knew he would be okay, so we went on to start classes on how to care for his trachea.
With kayden having more than 1 thing wrong it prompt the Dr's to do chromosome testing without telling us. 2 weeks later we were told our son had trisomy 18. We were told that most kids die at birth and only 10% live past their first birthday. We were crushed, heartbroken and shocked as they told us if for some miracle kayden lived longer than the first few weeks and months of life he would do nothing, know nothing pretty much be a vegetable.
I looked at the Dr and asked when are you going to put a feeding tube in him and let us take him home? The Dr said kayden also has malrotation of the bowls and intestines. Then said if we don't fix this it will cause an obstruction which is a painful death (but because he is t18) do you not want to do anything? WOW I once again was shocked, I said you just told me you can fix what is wrong with him at the moment YES we want you to fix it and put the feeding tube in him while you’re at it. We were both in our early 20's and also had a 2 year old at the time Braden. What made us think to go against what the Dr's kept wanting and what they kept suggesting (not treating our son due to t18)? What made my gut instinct always chose to treat? I ask this of myself because so many people are talked in to abortions or no treatments of these kids, parents are convinced by Dr's that kids like kayden will only know suffering and could never survive. We were so young so looking back how did we not fall in to this category? I’m so thankful to GOD that I always looked at like this, If I was given 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? I strongly felt that these Dr's had no clue and could not be 100% sure about our son’s outcome so we chose to fight for his life as long as he was fighting so were we.
Kayden came home the first time around 2 months of age. Because of the trachea he got sick easy and we went back in forth the first few months. 6 months old he had jaw distraction which helped him later around age 2 get his trachea out( something most Dr's would have never even tried removing  once placed in a t18 child) 10 months old he had clefts palette repair. Age 2 adenoids and uvula removed to create more breathing room,  So yes kayden has had a hand full of surgeries but without them he wouldn't be here today doing so well and loving every day of his life. Some question in the beginning Wye  would you put him through the surgeries? To those people my answer was always this. If you had an older child and found out they had cancer or something else that was life threatening would you not treat? Would you not do surgery if it could save their life? Yes of course you would so Wye would or should it be any different for a child born with something wrong? Over the last few years kayden hasn't had to have anything done, He did develop a type of seizure that looks like he is choking and drops his oxygen levels but has not even had one of those in almost 2 years.
I'm so overwhelmed, thankful and consumed with joy that my husband and I had the strength to walk this path that we loved kayden so much we didn't care how much our life would change. Today kayden is 9 years old and will be 10 June 19th. Braden our oldest is now 12 and kayden also has a younger brother now named Jaiden who is 7 years old. A lot of Dr's are convinced and will tell parents in the beginning that kids like kayden will be a burden on families that they will take all the attention away from their siblings and they will tear the family apart all just to have them die anyway. They say this will be a hard and emotional process that you can avoid all of this by not treating by letting them die. The Dr's were correct it was emotional it was hard it did make a difference in our family life what they didn't know was that he would forever make us better people for knowing him for being in our life and for loving us unconditionally, kayden has taught us so much about true meaning in love and patience. My boys will be better compassionate men for having a brother like kayden. Braden and Jaiden love everything about kayden and are always there to help when needed, they will sit and read to him and play with toys and tickle him. They would be lost without kayden in their life; we are all so proud and happily in love with kayden.
Kayden is nothing like they told us he would be, they said he wouldn't have quality of life. We have never treated kayden different and because of that I think he does even better. He can sign mom and dad and say momma. He is in a wheelchair but can scoot and roll to get into everything around him and even knows how to get off the couch on his own. He enjoys going on amusement rides and playing with toys and any attention anyone will give him makes him giggle and man does he love to bat those long eyelashes and flirt with the girls. Kayden is totally aware of his surroundings and understand without a doubt more than what he can communicate back. He has been to Disneyland and Disney world and Wisconsin dells. Been on planes, On rides, rode a horse, gone  down water slides, played in the sand at the beach, been splashed by waves from the ocean, kayden has  gone to the monster truck show at the metro dome he has even been zip lining and rode in go karts with his momma. Enjoys, cotton candy and pop-rocks and has played with butterflies at the state fair, gone on his brothers field trips and watched them at their baseball games, basketball games, soccer and hockey. All this from a child who is looked at from the beginning as having no quality of life who should be a burden on his family not to go anywhere who should be holding his brothers back from having fun and being in every sport they want.A Lot of adults have not done as much as my sweet kayden has in his 9 years of life.  Yes my kayden is truly amazing in every way, he has always been a fighter and so strong kayden is full of life, He is a viable and valuable part of our family. We are so proud of him and he is our hero. He never complains he starts and ends everyday with a huge smile. His bright blue eyes and contagious smile will melt any one's heart.
Without the early intervention of surgeries and us loving him and allowing him to explore and interact with life, kayden wouldn't be here today. If we would have listened to the Dr's and did nothing he would have died early on. We waited the first few weeks and year for him to die, today we plan for the future and live for today. Kayden does very well health wise and has managed to have very few hospital stays over the last couple of years. I contribute that to us not sheltering him and exposing him to everyday germs by taking him out in the community and showing him off. We are very protective of him and keep him home when needed and stay away from people who have been sick and always sanitize everything and wash hands, we take every precaution in keeping him safe and germ free as much as possible without restricting him from enjoying life and truly living life. When kayden was young this was not so easy for me at first I was afraid of exposing him and having him get sick and die.  I had a Dr once tell me that if I didn't take him out and sheltered him by keeping him home he would never build up immunities to normal germs in life. I finally relaxed with precautions of course and we are so happy we did. Of course kayden still has trisomy 18 which means he could get sick easy with something that could still take his life, people are miss lead by his age and how well he does and assume his life is safe. We know that something could change at any time. I don't think about it on a daily basis, if I did I wouldn't be able to get through a day I would be institutionalized as I would fall apart and not be able to function. Somehow I have learned to make his life mean something instead and once every month or two, I have a huge break down day of crying and holding him and telling him how much I love him and need him in my life how much his daddy and brothers need him as well. I beg him to stay strong and I pray to God for many many more years to come. I cry all day about anything and everything, these are the days to be sad about the what coulds and the what  ifs, these are the days for me being afraid of losing him. When they day is done  then I’m fine again I’m strong again and ready to love and watch my son LIVE. I’m thank full I m able to do this and not think and dwell and miss out on what I have today with him.
 I truly believe with all my heart that kayden has a purpose he is here to help make awareness and make change within the world around him. WOW the things I have been able to be a part of and in the process of because of having a child with trisomy 18.
Because of Kaydens life and story I have been able to share that with families coming into the trisomy 18 journey Kaydens story has helped parents that once were going to abort because Dr's tell them there is no hope have chose NOT to do so after hearing of kayden. Parents have chosen to take the DNR off of their child after talking with me and seeing that our kids can live and be happy. I helped a mom get her son airlifted from Nebraska to hear for treatment as the hospital her son was in was not even feeding him and had forced her to sign a DNR. I got accepted by the Governor to be a part of the board for partners in policy making for disabilities that taught me the ins and outs of law making and showed me I can make a difference, I can change how things are done if needed within our state and and if i'm lucky world. It gave me the drive I needed to approach my city and get accessible swings put up in our community. Now they gave me land hear in my town to have accessible play ground built one that every child can enjoy and play at. One a typical child will love and enjoy but one kids like my son can also fully play and enjoy. When my dream is finished kids like kayden will no longer be left on the side lines looking in watching the other kids play. They will be able to do it all as well. We have the land, and the equipment and lay out all picked out and done, the only thing standing in my way from starting the fund raising is a 5o1c3. I need 1 of 2 things I need a nonprofit to be my fiscal agent for this project to be that money collector or I need someone to help sponsor me the cost to become my own 501c3(which in the end I think will be the best)
This last year alone has been so full of life changing events for me because of my son. Another mother and I flew to New York for the day last march, yes you read that correct we took 4 planes in 1 day and made it back to Minneapolis with in 23 hours. We went there to speak at a Bio ethics conference about trisomy 18.The title of the meeting was "Trisomy 18 to treat or not to treat" we thought we would be walking in to maybe 10 to 12 people ha ha little did we know. We walked in to 300 plus different kind of Dr's and nurses and social workers. We sat there and listen to the speaker he talked about how and why we should not treat these kids and  preached to the audience that kids with t18 will not live will not show love and will not have quality of life or contribute to society. They said that we treat and waste money and surgeries to have them die anyway. They then open the floor to comments and questions we both stood and gave our story of our sons as Mary has a 6 year old son with the same thing,she stood and told his story and that she never heard a mom say she had to much time with their child. I then spoke as well  I started by saying you talk about time and money wasted just to have them die, what about cancer? Our world spends millions of dollars a year on cancer patients who die anyway. I said you could never dream of a Dr going to the cancer floor at children’s and saying to a mom your daughter/son has cancer and chances are no matter what we do they could die so we are not going to treat them so why should they be able to do that for these kids? I then said you also treat older people that have no quality of life or can contribute to society. Animals have more rights than kids with t18.I then told them I am a parent of  trisomy 18 child I held up a photo of my son at 3 days old just trached and laying their hooked to machines. I said this is that baby you paint a picture of to everyone the baby on its death bed all fragile and weak. I then held up another photo of kayden on a ride smiling from ear to ear and said but this is what I have now 8 years later this is the child you don't let moms and dads know about this is the child who you say has no quality of life and yet hear he is smiling and enjoying life. The audience applauded and after we had a pediatrician come up to us crying saying she couldn't believe that Dr's strait out lie about this to parents and that our stories needed to get out there. We had so many come up to us asking more questions and definitely  looking at t18 in a whole different lite.The bioethics guy was snot so happy haha.  I got the chance to do this again in San Diego this last October and I pray I can raise money to continue to go and speak at these conferences. This is the one thing not being done that needs to be. We have support groups and chats on face book but no one really getting out there speaking and showing our kids are worth fighting for. T18 is looked at how downs use to be looked at years ago you were told to institutionalize downs kids and that they too would do nothing or have quality of life. Someone spoke up and didn't stop and that's why today we know that's not true they do way better than ever once thought. Well most of us know that as we still have parents adn Drs who think they too are not worth living.

 I want that change that chance for everyone to know about t18 everywhere and know that it does not always mean immediate death and that our kids can be happy and show love. On face book we have a strong community of t18 families that have pulled together and help fight for each others kids. A community of people who have never met in person pulling together and helping get children airlifted to hospital that will help that will feed and will treat our kids. It’s amazing to see the love we all have for each other and how much we are willing to help each other fight. We may not be able to change every heart of every Dr But we can change some 1 by 1 or at least fight and win against some of them. My dream is that one day soon I will be able to help get the word trisomy 18 out there for everyone to know about so no Doctor  can continue to mislead and lie to parents. I’m not naive I know that some kids no matter what you do to treat  can still die anyway but that is the same with anything with a complexed medical issue. All I ask is that these Dr's give our kids a chance and treat them individuality and not the diagnosis as a whole. I truly believe that more kids would live if given a chance. Early intervention is the big key. Medical books have not been updated since the 60's and everything reads death. To show you how wrong they are about their only 10% live past a year. Here in MN I have found on my own a handful of kids all with in a 2 hours radius the oldest in our group being 23 years old now and this is just what I have found on my own, who knows how many more are around us. Just goes to show that the 10% needs to be re-looked at cause how could we have so many living so close.

Life is not measured by the breaths we take but by the moments that take our breath away.


  1. Good job Marta! Keep those posts a'comin!

  2. Great Job Marta! Joining the blogging world!

    I'm linking to your blog and posting about you and Kayden today, since it's T18 awareness day, and you guys are in the hospital.

  3. Thank you for sharing your beautiful story. I would love for my best friend to read your story. She is 7 months pregnant today and her baby has Trisomy 18. Doctors do not give her baby girl much hope. I can I connect her with you? Thanks so much!