Dear Dr. del Nido,
Our family has overcame alot recently, a difficult preterm diagnosis, a 52 hour difficult labor and now news that the only thing to save my 5 day old son is a heart transplant, which we’re told may not even work. I cannot begin to describe the helpless emotions I bear. How I wish my own heart would be transferrable.
I fully believe that even in the most difficult of times, ones that we cannot navigate, God leads us and that’s how I fully believe I found you.
I ask a great thing of you, to review my son’s medical records for any chance at all, any that he may live and I may give him a love as great as God’s love for us. I can only imagine how busy a Cardiac Surgeon is, let alone the top pediatric Cardiac Surgeon in our great country. I will be forever in-debted to you.
I have contacted Children’s and will personally be making sure today (10/13/09) that a complete set of his medical records and all associated tests will be emergency shipped to your office marked “URGENT CARE: AIDEN BEERS”. He doesn’t have much time, I can feel it.
There are thousands of people, ones that don’t even know my “little bugger” praying, hoping, watching (see http://www.babyaidensjourney.com). I’m not asking you to do this for free, I have some of the best medical insurance in the country that will pay for transportation and care. I will personally vouch for anything this takes.
God Bless You and Your Family.
Sincerely,
Levi, Tracy & Aiden Beers
303.808.1463
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:
I will be praying Dr del Nido can help Aiden. God has certainly blessed Dr del Nido with talent. I have a close group of heart friends all of whom have children with (UBAVC) Unbalanced AV canal who have traveled from all over to go to Boston, FL, NE, WV, NY, MO….here a few more carepage names of kids with repaired UBAVC, done in Boston by Dr Del Nido..their stories, very similar to Wills..local surgeons did not think a full repair could be done, yet God had other plans!
carepages:
AnnaLeighBarretts
LaneyBethsHeart
Mayasplace
caringbridges sites:
Lukehaskell
GabrielJohnston
other websites
http://www.bryantfamilynews.com
http://www.Jacksheart.com
I will not tell you it is a easy road, it is a newer procedure, but as you see, many children are surviving and thriving. Of course not all children are canidates and there have been some who have been lost to complications…but Boston sucess rate is very high.
I will keep praying that God lead your heart to know what is right for sweet Aiden and know that what ever you choose, you have many families out there who fully support you. May God comfort you today. Kim
Lord we just thank you for the possible oppurtunity you have opened the door for with this Dr for Aiden. I thank you that you will get this letter to Dr Del Nido and that he reads it. I pray that if this is a small hope that you make the way clear! I ask that you give all the Drs involved, nurses, staff, Levi, Tracy a better day today that they all will be working with clear minds for the best possible treatment for little Aiden. Give them your stength and wisdom and let your peace fill their hearts as they face these difficult decisions Lord. We know that baby Aiden is in the palm of your hand father and we ask for a miracle only you can do now.
In Jesus name……Amen
The Bible says in Matthew 18:20 ” For where two or three are gathered together in my name, there am I in the midst of them ”
So I ask that anyone who reads this post today will pray that same prayer and stand in agreement with me!!
…I just typed a long message to you and lost it! So now the short version..
Im praying for Aiden, praying for you, praying that God give Dr del Nido his wisdom on how to help Aiden and that you hear from his so very very quickly…
here are page info for other children who had repair for UBAVC (unbalanced ava canal) with Dr del Nido…they have traveled from all over the country and I know each of them well.
Cp
HeWill (my sons)
AnnaLeighBarrets
Laneybethsheart
mayasplace
canringbrige sites
lukehaskell
gabrieljohnston
other sites
http://www.jacksheart.com (in Boston now recovering)
http://www.bryantfamilynewsblogspot.com
I know any over these families are happy to hear from you. Email any of us.
This inst a road that is easy, but the success rate is good.
whatever decision you make, you have so much support from us all.
God will lead you to what is best for Aiden. What feels right…is right. (((HUGS)))
Kim forwarded me your site. Our daughter Anna was taking to Boston 1 year ago for her repair of the UBAVSD. Dr. del Nido was able to give us four chambers and we are so greatful. I know it’s not easy to deal with all these tough days. We were told several times that we shouldn’t expect Anna’s first birthday and once that she wouldn’t likely make it through the rest of the day. She is now 2 1/2 and is onery, loving, mischeifious and so wonderful! Her heart journey isn’t over, but we know God’s plan is bigger than the doctors!
Praying for all to go according to God’s perfect plan.
Tina Barrett & Anna
Oh Levi..I came looking for an update to see when Aiden’s surgery would be…I can’t even imagine your pain. You are on the right track, though, keep praying and search out the the best of the best to help Aiden. You are still in my prayers! Please keep up with the updates, I am anxious to hear if you are able to travel to Boston. Please tell Tracy we are thinking of her too…to feel that life kicking and moving inside you then to be told he might be lost…
Peace be with you.
Amanda
Levi & Tracy -
Found your blog through two friends who have babies with heart defects, one of which is my godson, who has already had one open heart surgery. I have just sat here at my desk reading the updates with tears streaming down my cheeks. I am also a mother to a healthy 14 month old and I think God EVERY single day for her health. I simply cannot fathom facing the decisions that you are facing. But please know this: I will be fervently praying for your sweet baby boy, Aiden every day, all day! I hope and pray that the opportunity for the doctor at Children’s in Boston might present a solution. May God bless you both and precious Aiden. You are so right, he is here to change lives. He’s changed mine and many others, I know. May our heavenly Father wrap His loving arms around you all and give you strength for the fight, understanding for the setbacks, determination for the long haul and grace for the good moments. You’re being lifted up to the Great Physician. God’s blessings upon your family……
With love and hope for healing,
Pam Mitcham
Baton Rouge, Louisiana
We all hope and pray Boston is your answer. If you need us to do anything, please let us know. I know you guys have been thru so much and I can only pray Dr Nido has the answers we all need to hear!
Tons of prayers to your family and little Aiden. My son was born 20 mos ago with TGA. He was later diagnosed with coarctation at 3 mos and his cardiologist was advocating a second surgery so we got a second opinion at Boston. That was in August 2008 and since transferring to Boston he hasn’t needed ANYTHING! He’s doing great. Another heart Mom (TGA) I know from my hospital had a terrible delivery and her baby had strokes. The hospital (ranked in the top ten for pediatric cardiothoracic surgery) told them to take him home to die and refused to do the Arterial Switch Operation. She took him to Dr. Del Nido and he did a very risky and controversial “double switch” on the baby at 3 months old. This is an operation that even the best of the best are hesitant to perform. the baby is 16 months and doing absolutely fantastic. Dr. Del Nido is second to none and Boston is where miracles happen. Our card is Dr. Marx- he has always been extremely compassionate as well as very helpful in navigating through the hospital system. Please email me if you need any further help and keep calling- don’t give up! Good luck.
That letter is great and I am sure Dr. Del Nido will take over the care of Aiden. I am praying that he is able to fix him. You and your family have been constantly in my prayers today.
Hi, found your website through a Google alert search (”pulmonary valve”). Your son’s diagnosis sounds just like my 3 year old’s diagnosis! He does have situs invesis and malrotation and a single spleen. After the BT shunt and Glenn surgeries, his 3rd was the biventricle repair with Dr. Del Nido last year. I am a little unclear why the doctors are saying your son needs a transplant or else…(unless I misread your blog). Why didn’t they do the BT shunt?
Please email me if you have any questions or would like more info. Our prayers go to you and your family.
Hi, my name is Stephanie Lynch and I was given your website by Kim Knipp. I have a little girl who is 12 months old and was diagnosed with hyposplastic left heart syndrome while I was pregnant (she also had Down Syndrome). At the time, we talked to Boston, but were never in touch with Del Nido. Through much much prayer and research and b/c of our proximity we decided to have Ellis Anne’s surgeries at Arkansas Children’s Hospital — we are from Arkansas and live 2.5 hours from Little Rock — our surgeon was Dr. Robert “Jake” Jacquiss — for us he was excellent. I want to encourage you in your fight for your son. God spoke to me when I was pregnant with Ellis Anne, and he told me to “do whatever you can do to keep this baby alive.” You are doing the right thing in contacting Del Nido — he has been successful with giving hope to so many families. I pray for God’s perfect and clear wisdom for you all — DO NOT GIVE UP THE FIGHT! I will be praying for Aiden and will look forward to hearing Del Nido’s response.
Love,
Stephanie Lynch
Arkansas
I found your site through a google alert I have set for “Pedro Del Nido” who performed open heart surgery on my son in September 2008. Our son had been treated at Boston since 28 weeks gestation when he had an in utero ballooning of his aortic valve to (hopefully) prevent the onset of Hypoplastic Left Heart Syndrome. We came to Boston from New York City, home to some of the best pediatric cardiologists in the country, and we went to Boston because we were told we needed THE best. We had a rocky start but eventually things were stable enough for us to spend two glorious months at home. However, at 4 months old our son had a cardiac arrest. He survived, thanks to the doctors at Columbia/Presbyterian in New York City, but had a long road to recovery. To doctors at Columbia said he needed a transplant, and would be at high risk to survive. We were on the phone with Boston immediately who said that Dr. Del Nido had done 3 previous surgeries in children like my son and they thought it could have a good chance of helping him. We headed to Boston and our son had endofibroelastosis resectioning (they cut the scar tissue out of his left ventricle) and major valve repair performed by Pedro del Nido. After he recovered from the surgery, the improvement was immediate, and he’s been improving ever since. He’s now 18 months old and doing amazing. You should be able to get someone from Boston to return a call today. Start calling around. (there is contact info for all of the cardiologists on the Boston Children’s Website. Try Gerry Marx 617-355-8794 and Audrey Marshall 617-355-6529. have them paged and leave a message. They can help you get to Dr. Del Nido who is very very busy. You’re already doing everything you can to help your son and I wish you the very best.
I was sent by Sunday and I would like to let you know I will keep your son in my heart and prayers every day. Miracles truly can happen. Stay strong and good luck.