Comments on: One patient’s story: my baby’s congenital heart defect

By: Donna Baker

Donna Baker — Tue, 15 Jun 2010 04:05:00 +0000

I have a granddaughter, Izzy, who has HLHS. She also went to Children’s Hospital Boston for her first surgery in 2002. We live in Alabama and no surgeon could perform the operation, so Izzy’s parents chose for her to fly to Boston. She and her Dad flew to Boston when she was not quite two days old. Her Mom and I flew up shortly thereafter. Izzy had her surgery when she was three days old. Children’s Hospital Boston was the best place she could have gone. Izzy will be 8 years old on June 17. God has definitely blessed her. The staff was wonderful and I thank God all the time for people with a desire to help children with heart defects. Your story is very heart-warming and I pray only the best for your baby.

By: Twenners11

Twenners11 — Tue, 15 Jun 2010 02:06:00 +0000

I love Boston Children’s they are amazing, my daughter was also diagnosed with HLHS and was delivered and had her surgeries out there, She is now21 months and doing wonderful thanks to everyone at Children’s especially Dr Emani, we love them dearly for helping Mackenzie and giving us an amazing little girl that we can watch grow up into an amazing woman. Your son is adorable! So happy that things are going well. It is definitely a wake up call to find out that you are having a child with a sever medical condition and that just 20 years ago there was no hope for our children. Such an inspirational story! thank you for sharing and THANK YOU CHILDREN’S for all that you have done for my family and so many others. Your staff is TRULY EXCEPTIONAL!
Tammie mom to Mackenzie HLHS 21 months and amazing me everyday!!

By: Kristin Hartford

Kristin Hartford — Mon, 14 Jun 2010 16:02:00 +0000

What a blessing your son is! We also have a son with HLHS who is now almost 10. The first few years of his life were extremely difficult. He is a trooper though. After completing all three surgeries he is now playing baseball and was just given the go ahead to play basketball, something we were told would never be possible. We are grateful to the doctors and staff at CHB for our little miracle man and yours as well!

By: Jkelleher61

Jkelleher61 — Mon, 14 Jun 2010 14:13:00 +0000

amazing story, i’m 19wks pregnant now and have an ultrasound this week. i pray that nothing is wrong and that my son will be born healthy. but it is good to know that miracles do happen, like with Parker (who is adorable by the way) i hope that i’m never put in a situation like that, but if i am that there is the dedicated staff at CHB. one of my dear friends had a born son with a life threating disease(she found out at 22wks) he was takin care by the wonderful staff of CHB and just the short while i was there i could see the dedication and willingness to help the sick and needy. he is now a happy and healthy 3 yr old.
thank you for your story.

By: Ann

Ann — Thu, 10 Jun 2010 16:41:00 +0000

Great story about your son Parker. That is such a truly scary thing to go through. My son has atrial tachycardia, atrial flutter, and superventricular tachycardia. He has gone through 2 surgeries and is going to have another this summer 10. He wasn’t diagnosed until he was in in 8th grade, but it was a year and half of everyday rushing him to the ER. Doctors couldn’t tell me why he has what has or where it came from. Their just wasn’t enough research done on this kind of thing in children at his age. I was stumped. You mean you can’t tell me why he is having chestpains, was feeling like he was going to pass out among other things everyday. Until one day we moved back home from Virgina to Phoenix Arizona. Their i have been blessed two amazing doctors. His cardiologist Dr. Peter Baron and his peditrician Dr. Matt Barcelona. There Dr. Peter Baron did his 2nd surgery and gave me a diagnoisis and somewhat gave me a better explaination as to why he has this. But still yet at his age not alot of research is done. This is usually an adult thing as you get older. Between these 2 amazing doctors that sit with you as long as you need them to and expalin things and don’t make you feel rushed. Together with them my son now has been stabilized on the proper medications between his other health issues with the Peditrician and Cardiologist . They work together making sure his meds don’t interfer with one another. Without amazing doctors such as these two Dr. Peter Baron and Dr. Matt Barcelona i think i would have been at my lowest, not knowing who could help my son. Thanks docs. I truly understand about the research with CHD in children more needs to be done to help future parents and children. Thanks for your story. Ann

By: Annamarie

Annamarie — Wed, 09 Jun 2010 22:30:00 +0000

Great story! So glad Parker, like our baby Eve, received such exceptional care at Children’s Boston. You may want to let his mom know that your hospital is soon to implement its own pulse oximetry screening program as a standard of care. It’s simply good practice and more and more hospitals around the country are doing this without mandate. Newborn screening for CCHD is going through the formal review process right now – at the federal level – via the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children. The nomination to add this as a universal screening was unanimously approved in January 2010. Implementation at the state level will be much, much easier once a national recommendation comes through from the Secretary of Health and Human Services. We expect this to happen soon! Funny how these kids with their challenged hearts can get families so engaged in making a difference. Working on these important issues for other families has made this past year among the most rewarding of our lives. Thank you, Dr. del Nido, Dr, Triedman and Children’s Boston. The Saarinen Family – Eve (17 months), Elle, Jack, Paul and Annamarie