[Congressional Record (Bound Edition), Volume 152 (2006), Part 2]
[Extensions of Remarks]
[Pages 1771-1772]
[From the U.S. Government Publishing Office, www.gpo.gov]




                  THE GRACE ALICE CAMPBELL FOUNDATION

                                 ______
                                 

                           HON. BARNEY FRANK

                            of massachusetts

                    in the house of representatives

                       Tuesday, February 14, 2006

  Mr. FRANK of Massachusetts. Mr. Speaker, this week is Congenital 
Heart Defects, CHD, Awareness Week. Across America, over 1 million 
families face the challenges and hardships of raising children with 
congenital heart defects. Roughly 1 in 125 children are born with 1 of 
approximately 35 different congenital heart defects in the United 
States. Some of these are treatable with medications while others 
require surgeries or even transplants. Heart defects are the No. 1 
birth defect in the United States, affecting 32,000 babies in the 
United States every year. They are also the leading cause of birth 
defect related deaths worldwide during the first year of life, and 
while genetics or environmental factors are assumed to be the cause for 
congenital heart defects, it will take more research to help uncover 
their cause.
  The Grace Alice Campbell Foundation, founded by her parents Brenda 
and Chris Campbell of Mansfield, MA, which is in my district, has been 
established to raise public awareness of these birth defects, assist in 
the treatment of these children, and raise research funds to help 
doctors discover the cause of congenital heart defects and find a cure. 
Grace Alice was born on September 4, 2003, with Hypoplastic Left Heart 
Syndrome, and by the time she was 5 months old, she had already had two 
open-heart surgeries. Now as a toddler, Grace Alice's perseverance is a 
wonderful example of love and courage for others every day. The 
foundation, launched by her parents, serves as a support group for the 
families of those affected, encouraging these families to celebrate 
life, remember loved ones lost, and to honor dedicated health 
professionals.
  I extend my congratulations and express my admiration to the Grace 
Alice Campbell Foundation for its hard work on behalf of those affected 
by congenital heart defects and their families. I also ask that, 
because of the resolve of the Campbell family as well as many others 
across the country, the article, ``Heart Buddies,'' by Deborah Knight 
Snyder in the Norton Mirror, published on Friday, February 3, 2006, 
documenting the courage and struggle of these families, be printed 
here.

                             Heart Buddies

                       (By Deborah Knight Snyder)

       One in every 100 babies is born with a heart defect.
       February 7-14 is Congenital Heart Defects (CHD) Awareness 
     Week, and a group of Massachusetts mothers agrees word needs 
     to get

[[Page 1772]]

     out about the many children living with CHDs. For these 
     mothers, that awareness is simply a way of life, because 
     their children were born with heart defects.
       ``People know more about conditions like Down's Syndrome 
     and spina bifida than they do about heart defects, when heart 
     defects are actually the number one birth defect in the 
     United States,'' said Lyn McPhail of Braintree during a 
     recent support group meeting in Mansfield for mothers of 
     children with CHDs.
       Increased consciousness will hopefully lead to more help 
     and, ultimately, to more funding, she said. There are 
     approximately 35 different types of congenital--meaning 
     present at birth--heart defects.
       McPhail is the mother of 15-month-old Cameron, who was 
     diagnosed with a CHD when he was just 1\1/2\ days old.
       Cameron has had two heart valve operations already and 
     still needs a valve replacement. The quandary, his mother 
     explains, is what to do next. There is a small mechanical 
     valve available for children who are at least 2 years old, 
     but that valve will become too small as he grows and would 
     ultimately require yet another operation. However, she said, 
     there is clinical testing currently underway in Canada and 
     Europe which could produce better options.
       ``You're just racing against time,'' she said.
       McPhail is a member of Heart Buddies, a group of mothers 
     and kids from all over the Boston area who get together every 
     month at each other's homes to lend and provide support. The 
     mothers initially met through literature from Children's 
     Hospital and through Little Hearts, Inc., a Connecticut-based 
     organization which lends support to families of kids with 
     CHDs.
       The children--who outwardly appear to be healthy, chubby 
     babies and toddlers--play, while the mothers talk about their 
     experiences.
       The mothers--who sound like cardiologists to the untrained 
     ear--discuss the children's progress and their setbacks, and 
     about new medicines and treatments which could help their 
     kids.
       When the mothers are together, they share a special bond 
     and code of understanding.
       Parents of kids who are ``heart healthy''--a term the 
     mothers use to describe children without a CHD--just can't 
     comprehend their daily lives.
       ``It's nice to able to talk and not have to explain 
     everything,'' said Brenda Campbell of Mansfield, whose 
     daughter, Grace, now 29 months old, was born with a 
     congenital heart defect.
       ``We can ask each other `does she look blue to you?' That's 
     our life now,'' Campbell said.
       A bluish color could be an indicator that the child is not 
     getting enough oxygen, and is a possible precursor to these 
     parents' worst fear: that their child is going into 
     congestive heart failure.
       ``That's certainly a daily worry,'' Lyn McPhail said.
       Many of the mothers got their diagnoses while they were 
     still pregnant, while others received the news--which they 
     all called ``devastating''--when their babies were just one 
     or two days old.
       Grace Campbell was born without a left ventricle in her 
     heart. She had her first surgery when she was just six days 
     old and her second surgery at 5\1/2\ months.
       ``They put in totally different plumbing to help her right 
     ventricle do all the work,'' Brenda Campbell explained.
       The Campbells have taken a proactive approach by organizing 
     the Mansfield based ``Grace's Run,'' which annually raises 
     money for families with children with CHDs and for Children's 
     Hospital.
       Zachary Duong of Wilmington was born on the same day as 
     Grace, and his mother, Sheila, met Brenda Campbell in the 
     hospital. Zachary is now 2 years old. He was diagnosed with 
     his CHD the day he was born and was rushed to Children's 
     Hospital, where he spent the first three months of his life.
       Megan Lea of Mansfield, now 18 months old, was born with a 
     very rare set of CHDs. She has a condition known as Ebstein's 
     anomaly, an abnormality in the tricuspid valve. She also has 
     cardiomyopathy, a disease of the heart muscle that can cause 
     it to lose its pumping strength. With cardiomyopathy, doctors 
     have told the Leas that about one-third of the kids get 
     better, one-third stay the same, and one-third get worse, so 
     Megan's parents have no choice but to wait that one out.
       There is a possibility that she will need a heart 
     transplant at some point. She will also probably need valve 
     surgery for the Ebstein's anomaly. Right now doctors are 
     trying to manage her conditions with medications, and she is 
     currently on four different heart drugs. Megan was on oxygen 
     for the first 10 months of her life but is now breathing well 
     on her own.
       ``The progress they're making is unbelievable, but it's 
     scary because we don't know what their future is,'' Ellie Lea 
     said. ``Her cardiologist said that Megan looks a lot better 
     than expected. We just take it one day at a time.''
       ``The mother's group is good, because we understand each 
     other,'' she continued. ``Friends who aren't `heart moms' 
     ask, `So, is she all fixed?'''
       ``I hate it when people ask that!'' exclaimed Delys Poynton 
     of Braintree, the mother of 19-month-old Amy, who was born 
     with Hypoplastic Left Heart Syndrome (HLHP). Kids with HLHP 
     undergo a total of three operations--known as the Norton 
     procedure, after the doctor who discovered it--and then hope 
     for the best. Like some of her friends in Heart Buddies, Amy 
     has undergone two of those three operations already.
       ``These little kids have already experienced things most 
     people never have to experience in their whole lives,'' Delys 
     Poynton said. ``They get so used to seeing doctors, they get 
     stranger fatigue'' which affects the way they react to other 
     people.
       Ellie Lea recalled taking Megan to a hospital to visit a 
     friend, and Megan ``freaked out'' as soon as she got into the 
     hospital. Though just a baby, Megan understood exactly where 
     she was, and she wasn't happy about it.
       There's a name for the babies' reaction: ``white coat 
     syndrome.'' The children are so used to being poked and 
     prodded by doctors that they develop an aversion to them.
       Also, Delys Poynton said, many of the CHD kids develop 
     eating problems.
       ``When you have tubes up your nose for so long, you don't 
     want anything in your mouth,'' she said.
       Liz Bogyo of Chelmsford is the mother of 14-month-old 
     twins: Allison, who is heart healthy, and Andrew, who was 
     born with a CHD. Andrew was diagnosed when Liz was 17 weeks 
     pregnant.
       She recalled the trauma and exhaustion of having a brand 
     new baby at home, Allison--``who we didn't even get a chance 
     to know'' because she and her husband were spending so much 
     time at the hospital with Andrew.
       Andrew has undergone two operations and will have to have 
     one more. If that one goes well, he has an 85 percent chance 
     of survival, his doctors have said.
       Like the other families, the Bogyos said they take each day 
     at a time and hope for the best.
       Ruth Kennedy of North Reading found out when she was 19 
     weeks pregnant that her son, Ewan, now 2 years old, had a 
     CHD. She received an initial diagnosis of just ``heart 
     defect'' with no additional details and recalls ``just 
     sobbing'' as she walked past the other women at Mass General 
     who were waiting to get their ultrasounds. Ewan has had two 
     operations with another one coming up.
       ``Long-term, they can't tell you what to expect. No one 
     survived before. You just have to take it day by day and be 
     happy with what you have,'' Ruth Kennedy said.
       Because of the advances they've made in the last 20 years, 
     there is no existing group of adults who would have had 
     access to the medical care these babies are now receiving, 
     the mothers said. Consequently, there is no real information 
     available on what kind of future awaits these children. Their 
     parents have been told by the children's doctors not to 
     expect Olympic athletes, but to hope for a normal life. 
     Still, no one knows for sure. The situation has given the 
     mothers a different outlook on life.
       ``It's like a poem I heard about,'' Lyn McPhail said. The 
     poem is all about planning for a trip to Italy, and 
     anticipating being in Italy, but when you arrive at your 
     destination, you're actually in Holland. You deal with being 
     in Holland, she said, ``but the dream you had of going to 
     Italy is still very real.''
       ``You just appreciate every little thing all the more. 
     You're so grateful for the good things,'' said Ellie Lea. 
     ``It's a very humbling experience.''

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