… His heart after some very careful review from a wide array of Children’s Hospital specialists is that Aiden can either come home to die, have a BT shunt and die because it didn’t fix the problem or have a full on heart transplant. Our chances are low. We don’t have the money to really do this but somehow I’m going to try.
My sweet son, i’m so sorry…. So so so sorry
This website was setup by Aiden's Dad to document Aiden's journey when we learned of his Congenital Heart Defect (CHD) at 20 weeks prenatally.
On October 23rd at 8:02 PM MST our Aiden passed away from that Congenital Heart Defect (CHD) ... and you may wonder, what is a CHD if you've came across this page from a friend or possibly from Google searching because your new baby has been diagnosed with a CHD and like me, you're scared and on Google, something they told you not to. I'm sorry my story doesn't seem initially to have a happy ending, but it does. Many born with CHD not just survive, they THRIVE! And for some, actully the last very rough CDC estimate was 5,600 children die a year (an average within the last few years) from Congenital Heart Defects.
Every year 40,000 families face this same reality: their child has a heart defect. My family knows that hearing “Your child has a heart problem” completely changes a family forever, there are many teary nights, many of us plead with God – let it be us, not them. We sit and await surgery day with high expectations and the greatest feeling of fear we will ever have. 1 family out of 10 will be sent home with a book, “How to deal with grief” instead of taking their child home.
My wife Tracy and I have founded an organization to support CHD Awareness as well as those that have lost a child due to Congenital Heart Defects called Aiden's Angels. Look back for a link to Aiden's Angel's.
If you have any questions you may add us if you have facebook:
Matthew 17:19-20 "For truly I tell you, if you have faith the size of a mustard seed, you will say to this mountain, 'Move from here to there,' and it will move; and nothing will be impossible for you."We founded a Facebook group called "Praying for Children with Health Problems" - if you have a Facebook account and would like to receive notifications and praise reports on children with heath problems in need of prayer please visit us below:
Im sorry you are having to make such horrible decisions for your child. I know how hard it can be. My son (also unbalanced AV canal)had BT shunt and Glenn, and was on a downward trend….another mom encouraged me to seek a second opinion from Childrens Hospital of Boston…I had no hope at first…I thought there was nothing they could do that our local childrens hospital could not (KC…a big peds heart center) BUT God lead us there, and his surgeon did repair his heart…with a ventricle GROWTH procedure.
I know you are overwhelmed right now…but this is the surgeon, with God’s guidence, that saved my son…Dr. Pedro del Nido Unbalanced Av Canals are his speciality, he is the head of the #1 childrens cardiac surgery in the US, he is the head of pediatric cardio-vascular surgery at Harvard…he is the best. This is his email…he does check them and always emails me back with in 24 hrs and that is when I simply email to tell him how well my son is doing. Pedro.DelNido@CARDIO.CHBOSTON.ORG
My prayers are with you…and baby Aiden
you may read my sons story at carepages page name HeWill
I am really sorry to hear this. I will pray for your family. Aiden is a strong little boy and has already shown you so many miracles, I will pray he continues to.
I am not sure if you have looked into this but here is a link to your states(I believe you are in CO) medicaid program for kids with health and disability needs. Aiden is on this in WI and it picks up everything that our primary insurace does not. And income does not matter. http://www.colorado.gov/cs/Satellite?c=Page&cid=1213781362679&pagename=HCPF%2FHCPFLayout#CHILDREN‘S_HCBS_WAIVER
levi and tracy, we are so sorry for what you are going through. we are praying for you.
Levi, leave me a message on my blog with your email address when you can. I won’t post it. I want to get in touch with you re: transplant costs, etc. I want to help get the services donated if possible. In my opinion, there’s no excuse to NOT save a baby’s life if you can, so hospitals denying care due to money issues is a moot point to me. It doesn’t exist. Please know I am praying for all of you.
Levi and Tracey.Dan and I are praying for you and Aiden.Please if there is some way we can help let us know.I know God can give us the miracles we need and i am believing he will.
I have been forwarded your story. Please know you are in my prayers. I would encourage you to pray the Divine Mercy Chaplet Prayer. It is a beautiful prayer with much hope. http://thedivinemercy.org/message/devotions/praythechaplet.php
God’s Blessings be upon you all.
Levi and Tracy,
Please do not accept the statement ‘take your baby home to die’. That is what the first hospital we were at told us. I know our situations are different and I don’t know much about the heart problems Aiden has, but I know that God answers prayers and there are a ton of people praying for Aiden and for your whole family. My family will continue to storm the gates of heaven praying for all of you.
Pray about it and do what you and your wife feel is right for your son. You can always worry about the financial aspect later. You should ask to speak to a hospital social worker-they can tell you what options are available to help with the costs. When our son was in the hospital, we met many many people who did not have the money to pay for the procedures for their children (ourselves included). We even met one man who was paying the hospital $10 a month because that is all they could afford.
Still praying for your little boy!
Carolyn
Levi, you just hit me in the face with the awful reminders of life in the PICU. How things change second to second and you seem to take one step forward and two steps back. This was not the news I wanted to hear as I came here for an update on your beautiful baby boy. Please, get a second opinion, yes, even Boston if needed or Ann Arbor Michigan. I will not stop praying for you and your little guy. I hope something soon and wonderful can be done to help. Move heaven and earth if you have to.
Levi-
I am so sorry to hear this news. Don’t worry about the money issue, I know it’s hard not to, but they will not deny him treatment because of your inability to pay (perhaps Aiden would qualify for medicaid). My heart is breaking for you Aiden and Tracy. Praying for a miracle.
Levi- I am SO sorry to hear this, DO NOT worry and stress about the money issue, easier said than done, i know…But we are talking about your baby boy, something you, your wife, and GOD created. Aiden is a FIGHTER, he hasn’t given up, and neither have the ppl that are praying and are behind you guys 100%. Money is God’s money anyways…Pray, pray pray it’s all in God’s hands he has a perfect plan for your baby boy! BE STRONG FOR YOUR LIL’ “BUGGER” God bless you, your family and precious baby Aiden!
I am so sorry that you had to get this kind of news. It’s the worst news any parent could ever hear. I live in Canada and I lost my son on May 27th 2009 at 22 days old. I’ll never forget the day they told us his life expectancy was not good. My son had a perfectly healthy heart, it was his extrememly small and abnormal brain that was the problem. Unforturnately, there’s no such thing as a brain transplant. I miss my son every day, I’ve even had a doll made to resemble him. But like you and your wife, it’s great family and friends and most of all our faith in God that has gotten us through all this. I am now 22 weeks pregnant expecting baby boy number 2 who looks perfectly healthy! Thanks be to God!