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

by Boston Children's Hospital staff on June 9, 2010

By Casey Bolton

During a routine ultrasound I had in the 20th week of my pregnancy, I learned that my soon-to-be-born son, Parker, would be born with a complex congenital heart defect (CHD) called hypoplastic left heart syndrome (HLHS).

Parker medical smile

Parker a few weeks after leaving Children's

Because of the severity of Parker’s condition, our doctors recommended an induced birth in Boston so he could be immediately rushed to Children’s Hospital Boston’s Cardiac Intensive Care Unit (CICU).

Parker’s first 24 hours of life were so unstable that doctors weren’t sure he’d make it. His condition was so severe that even as his parents we weren’t allowed to see him in the cardiac ICU until they could stabilize him with an emergency catheterization.

Parker had to undergo his first heart intervention at just a few hours old. Then, at only 7 days old, he underwent his first open heart surgery. His chest remained open after the surgery because his heart was so swollen; finally it was closed on Christmas Day. We spent that Christmas hoping for the best, but he was not adjusting well to the change.

Parker medical3

Parker six weeks after his second open heart surgery

Due to Parker’s condition, doctors said he required either three open heart surgeries or a full heart transplant. We choose the three surgeries because Children’s had a reputation of successfully performing surgery in that way. Originally, Parker was supposed to come home between the first and second stage of his heart operations, but unfortunately he didn’t do well after the first surgery and needed to remain hospitalized with the support of the hospital equipment and medicine in order to survive to the second stage.

Parker had the second open heart surgery on March 3, 2008. This was one of the earliest stage II surgeries performed by cardiac surgeon Dr. Sitaram Emani, who preformed Parker’s operation.

Thanks to everyone at Children’s, after nearly 15 weeks in the hospital, Parker was finally discharged and able to come home for the first time in his life.

Parker is now home and he receives eight different medications, 16 times throughout the day. His next open heart surgery will be sometime between Thanksgiving and Christmas of this year. Eventually, Parker may need a heart transplant, but we are hopeful this isn’t for years to come.

Parker- a ray of sunshihe?

Parker Bolton: a bright future requires eye protection

Because of Parker’s condition we have learned to cherish each and every moment. Life is no longer about milestones, but about the moments. The difference between good days and bad days no longer seems so important; we are just thankful for the days. We are forever grateful for the first class care our son has received at Children’s; we truly felt he couldn’t have been in better hands.

The entire staff was amazing, and the dedication I felt from Dr. Sitaram Emani and Dr. David Brown goes beyond words. We were at Children’s for 95 straight days and I felt like they were always available to us for assistance, guidance or to answer our questions. They never made me feel rushed or that my concerns weren’t valid.

Seeing their dedication to and passion for helping children made me want to make sure all future parents of children with heart conditions are aware of the amazing care their baby can receive from Children’s Hospital Boston.

Casey and Parker

Casey and her son Parker after a 15 week stint at Children's

When I first received Parker’s diagnosis of HLHS I had no idea what a congenital heart defect was, never mind what HLHS was. When I left the doctor’s office that morning in tears, the only thing I had was a tissue with hypoplastic left heart syndrome written on it. Through our personal journey I’ve learned there just isn’t enough awareness or funding for research for CHDs. I’m amazed that the cardiologist we first saw in New Hampshire who diagnosed my baby couldn’t provide any information about his condition. I think most of my fears stemmed from the lack of education on the CHD and the fear unknown.

As a result I have made it a life goal to raise awareness for CHDs so other expectant parents aren’t as lost as I was. I’ve contacted many people, medical professionals and organizations in attempts to open the lines of communication about the dangers CHD. Thanks to work I’ve done with New Hampshire Governor John Lynch, this past February 14 was declared CHD Awareness Day in my home state. Currently I’m working with New Hampshire State Representative Lynne Blankenbeker on having a pulse oximetry test (which could help detect signs of CHD in babies and save lives) added to medical screenings of all newborns born in New Hampshire.

While I’m glad to have the opportunity to be a part of the fight against CHD, I am most thankful for the work and dedication of Dr. Emani, Dr. David Brown and the entire staff at Children’s Hospital Boston. They have given my son a chance at life, and I could never fully repay them— I am truly blessed to have Parker and my thanks goes out to Children’s for keeping him in my life.

21 comments

  • Annamarie

    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

  • Ann

    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

  • Jkelleher61

    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.

  • http://www.facebook.com/people/Kristin-Hartford/1546702097 Kristin Hartford

    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!

  • Twenners11

    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!!

  • Donna Baker

    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.

  • http://prayingforcarter.WebStarts.com Brentanddyana

    My wife is 18 weeks pregnant and we just found out that our son has HLHS. We live outside of Nashville, TN and I actually work at Vanderbilt. As you can imagine, much of my free time over the last few days since we found out has been spent researching this condition. All the doctors and nurses that were in the ultrasound room when we found this out were trying to be as comforting as they could be but all they could say was “I’m so sorry”. Telling parents that everything is going to be ok does NOT make things easier. I would rather people just not say anything. I was somewhat discouraged to see where Vanderbilt ranked nationally when it came to handling cases like this. I mean all of the information from Vanderbilt is positive and the outcomes for their patients with HLHS is pretty good but naturally as a parent, we want the best for our child. It is encouraging to hear so many positive outcomes coming from this hospital. Our little boy’s name is Boston Carter and how interesting it is that the #1 hospital in the country for this type of condition is located in Boston. God Bless you and all of the families who have experienced the miracles performed at this hospital. I just pray that we will experience this same miracle with our precious one.
    -Brent.

  • Casey Bolton

    Sending you prayers & positive thoughts! Please feel free to contact me if you have any questions or if you just want to connect with another heart family @ ParkerBolton4@Yahoo.com
    Take Care,
    Casey (mom to Parker =))

  • Andres

    Tengo una hija con 6 años que tiene la misma enfermedad que Parker, soy de España y me gustaria saber la situación actual de Parker. La situación de mi hija a pesar de que en su ultima operación no salió nada bien, es bastante aceptable.

  • HLHSMom

    I’m happy to see that your son is doing so well after such a tough beginning. My first born was not diagnosed with HLHS until she was 3 days old and in heart failure. Luckily, she was stabilized so that she could be transferred to Children’s Hospital of Wisconsin, where she underwent her surgeries. She is now 8 years old and the only way you can really tell she’s had any major health issues is from the scars from her surgeries. She is otherwise generally healthy- what you’d expect from any 8 yr old. And like you, I thank God every day for the people who took such amazing care of her and for the fact that she is still with us.
    God bless and good luck on continuing improvements!

  • Cminning

    Thanks for sharing your story. My 2nd daughter Caitlin has hlhs. She was born 1-8-08. She had the Norwood at 24hrs of life. Her glenn at 1 week shy of 3months and her fontane 9-13-10. She was not even 3 yrs, old. Her and Parker are about the same age. SHe had her surgeries at Cincinnati childrens hospital. I was very much aware of hlhs when she was diagnosed at my 20 week ultrasound. I am a pediatric nurse and my husband is a family practice doctor. My reaction to the dr was that this was incompatible with life. I am completely amazed at all the medical advances. Good luck and best wishes to u.
    Chrissy Minning

  • Ridergirltoo

    Casey,
    You have written a beautiful story about Parker. Though I am well aware of Parker’s story, I could not keep from crying as I read it. Your goal of not only making Parker a survivor but of informing and educating others about his condition is a wonderful act of selflessness. You and Keith are courageous people whose dedication to helping others understand and cope with CHD is highly commendable. I am very proud of both you.

  • Alysha Catabay

    I’m right there with you. my son is a miracle child with HLHS too. I am from NY and had a weeks notice to come to Boston but I thank my lucky stars every single day because the hospitals here have no clue how to deal with the heart defect. thank you for the story. the staff at CHB are wonderful and dedicated.

  • Alisha Goslin

    I too found out at the 20 week sonogram that something was wrong with our youngest son’s heart. We went to Pediatric Cardiology Associates in Portland Maine, since we live in Bangor for a fetal echo and hoped it was only HLHS. Unfortunately he had already turned into a birthing position and they couldnt ever see correctly. I was induced at Maine Medical Center on April 20th, 2008 and gave birth to M-Jay on the 21st. He was immediately rushed to the PICU and had his first open heart at 3 days old. He was born with 2 VSD, an interuppted aorta and no left ventricle. Since then, at 3 months old, during a routine cardiac cath, he had a stroke which caused seizures. Then last year on Jan 28 while I was checking his o2 and pulse I got a horrific reading. Pulse of 62 and o2 right around the same. We rushed him to Eastern Maine Medical, since we live in Bangor, but they knew nothing about him. Of course this happened at night. They thought he wasn’t going to make it. Finally I got in touch with his doctors in Portland. They said to get him stabilized and get him to them immediately. He had his 3rd open heart the next day and got a pacemaker. He’s been doing great ever since. M-Jay will need several more surgeries until he is completely grown, and then he will be carefully followed after that, but, he is truely my miracle child and we thank God for him every single day. ~Alisha

  • cheche

    Parker is just as cute now as he was when he arrived on 8 south(CICU).  It’s always a blessing to see our children go home and do very well.  I especially love when our former patients come back to vist and I have to chase them to keep up with them,lol.  Good luck to you Parker.  p.s.  Mom…Parker will make you pay for wearing those bunny ears….lol

  • juan carlos EMDEN

    we are here from Chile with our son Frederick Emden who is now 22 years old and in wonderful shape for his 4 th heart operation..we call it the 4 th LOVE relationship with this hospital where after having been diagnosed with a “Truncus artheriosis” shortly after birth we were in the hands of great Dr Aldo Castañeda for his 11 months surgery.Then came his third at year 3 with also Dr Castañeda. His 10 year old surgery with Dr Pedro del Nido , also from Chile , was performed beautifully here ,  and now his correction of valves and conduit with Dr del Nido again..all wonders of science and huge developments each time we have been here..the medical teams and the love and care of also Dr Jane Newberger have made again our life worth living after extremely strong and devastating hours of waiting for healing and GOD S action once more to keep our Frederick as a normal kid..

  • Hubertkori

    Hi Sir / Madam, I want to ask about HLHS. B’cause my son who was 2 weeks suffer from the diseases. I want to know how much does it cost for treatment ? And how much probably to succeed to surgery.
    I really hope some good news for this problem.
    Thank you

  • Melinda Dolder

    wow its crazy to read your story and see how cloesly it resembles mine! our daughter was diagnosed with HLHS prenatally along with very poor function. and they originally told us she was not going to make it to birth. but she did! our only option because of her poor function was heart transplant. so we listed three weeks in-utero. then waited two and a half months after she was born. then she got her heart! now we are 6 months post-op and she is doing great! but we spent 99 days in the CICU (close to yours) and like you when she was diagnosed, i had no idea what HLHS was. i wish there were people people who are aware…
    i also, like you, have learned to treasure every day (i had a baby HLHS heart buddy pass 4 months ago).
    God bless, Melinda

  • juan carlos Emden

    Frederick , 22 ,  is back to normal life here in Chile , with University exams and golf PGA tournament as a caddy for one of the good american players…even his english improved during his medical stay after the June 13 2011 surgery with the great team at Children s Boston!!Love to all those Mom s Dad s and kids that have lived these frightening experiences as we all have…

  • Carlaluana

    This is a beautiful story, my daughter was also diagnosed with HLHS and was cared for at Children’s as well. I am originally from Brazil, and a group of moms created a beautiful non-profit organization to help families who are affected by CHD, their work is so beautiful, they are reaching out throughout the country, with the government making the oximeter pulse test part of the newborn screening. Slowly but steady cities and states in Brazil are adding the test as part of the newborn screening. 

  • http://joseph.heavenboundministry.com/ Joseph Matthew

    Hi, Thank you for shaing your journey.  Our son as well went through open heart surgery at 3 weeks of age.  You can follow here: joseph.heavenboundministry.com.  Thank you again for sharing.

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