Comments on: One mother's story: Pentalogy of Cantrell

By: Crystal Williams

Crystal Williams — Mon, 18 Oct 2010 18:22:00 +0000

Thank you so much for this article. My son, Tristan who is now two years old was diagnosed with Pentalogy of Cantrell a few months ago. He was born with a giant omphalocele, an ASD as well as other heart defects, and a diaphragmatic hernia. We have been in and out of hospitals since he was born, and we came very close to losing him in February 2009 when he went into cardiac arrest due to breathing problems and ASD. He has had several surgeries so far, but we are coming up on a surgery to repair his diaphragmatic hernia (again), his cleft sternum, and his ASD. He has been through so much in his short life, but I am proud to say that he lives a great life and is ahead of his age when it comes to mental and physical development. Strangers have no idea anything is wrong with him unless we tell him, and he is just the happiest baby I’ve ever seen. But I just wanted to tell you that your story gave us hope when his future was looking very dim, so thank you.

By: Knight Brett

Knight Brett — Wed, 28 Jul 2010 09:10:00 +0000

hello sara, my name is brett knight. my wife and i were told our son will suffer the same birth defect by our doctor in Conroe texas. i asked if there were any options to save my sons life, our doctor flat out told us no. I live thirty miles away from houston and we have some of the best medical facilitys the world, i have not slept in three days and am trying desperatly to find help for my son. do i have any other options other than going to boston, that would be financially impossible. feel free to e mail me at knight.brett@ymail.com or call at 936 444 5343. i really dont know what to do.

By: Betty Grayson

Betty Grayson — Mon, 12 Jul 2010 20:30:00 +0000

I am so happy to read about your good news ! Have have a friend going thru the smae thing with her grandchild, does not look good. We pray for a good outcome. He will be wearing a colonsotophy bag for life.

By: Tracy Cronin

Tracy Cronin — Mon, 12 Jul 2010 14:39:00 +0000

Hi Sara!!!
This was beautifully written!!! I love to see Aidan growing up =)

Love, Tracy Cronin

By: Stephaniedmcalister

Stephaniedmcalister — Sun, 27 Jun 2010 23:14:00 +0000

so glad to read this,my daughter was born the same way all but the heart issue,she has a trach and was on a vent for 2 years just now come off of vent and o2,she had the giant omphalocele,she to has tube feedings,how did they do his feeding tube she has a ng tube bc they said it would be hard to put in stomach please email me at stephaniedmcalister@hotmail.com

By: Pocho_gm

Pocho_gm — Fri, 11 Jun 2010 23:04:00 +0000

iam so happy to see your baby doing good becuse it helps me to be a fighter for my baby he had meconium aspiration syndrome and many complications and he also had pulmonary hypertension he is now at home but he spend 2 months in the hospital he is also with feeding tube. god bless your family

By: Jessica O'guinn

Jessica O'guinn — Tue, 08 Jun 2010 20:17:00 +0000

tht is wonderful to see your lil one doin good it helps me be a stronger person for my son who is five days old and has down syndrome and a CDH the team tht is with my lil one is great over in vanderdilt Childern’s hospital in Nashville TN this is a wonderful hospital . And i want to ask who ever reads this to plz keep my son in your prayers his name is domanic rashade allen and he is my lil sunshine

By: Jessica O'guinn

Jessica O'guinn — Tue, 08 Jun 2010 20:04:00 +0000

I’m so happy to see your little one smiling im also a mother goin threw some of the same things but my lil boy is only five days old and has down syndrome and a CDH he is on ECMO and a venilater he is having his repair done tommrrow so if it is posssible to ask that my son be in your prayers . his name is domanic GOOOD luck to your lil one his is handsome