There’s a joy that comes with pregnancy and the anticipation of a new life.
That’s why the news that something is wrong with your unborn child is devastating.
Harriet’s parents received such heartbreaking news from doctors. Their baby was so poorly formed that the medics offered an abortion. But now Harriet Summerhill is a healthy two-year-old, bringing much cheer and joy to her parents in Pontypridd, South Wales.
She has defied all the medical expectation in an incredible journey of courage, hope, and strength. A 20-week old scan of their baby had revealed to Leighton Summerhill, 35, and his wife Emma, 38, that their baby had pulmonary atresia – a lethal congenital heart defect which meant the right side of the heart was not well developed.
The expectant couple was presented with 3 agonizing choices: end the pregnancy, let the child die naturally after birth, or risk open heart surgery.
Heartbroken, they chose to give, Harriet, as they had already named her, a chance at life. A toddler now, she has hit all her milestones, which her parents were too afraid to hope for. Mrs. Summerhill, who works as helpline manager, remembers clearly the day it was confirmed that their baby would be born with a deformed heart.
The consultant said it would be a half-working heart. She has said that she came to terms with the dire conditions of her baby’s state when she was told to choose between an abortion, natural death of the child after birth, or major life-threatening surgery soon after birth. She reveals that she was terrified and felt that all the hopes and dreams for her baby had been torn away in an instant.
She had suffered two miscarriages and she wanted to try her best to give her baby the opportunity to live. Knowing that there was a small probability that her baby would survive if they went ahead with the option of surgery, she and her husband opted to give their baby a chance despite the half-working heart.
There was no way they could have terminated her pregnancy. The couple, though aware that Harriet would be different from other children, was ready to give her the best chance possible. They knew her life would be far from ordinary but it was a chance they were willing to take. And now Emma says, ‘So far Harriet has successfully had the first two stages of surgery and is now a happy toddler who is continuing to surprise us all.’
Baby Harriet’s condition, pulmonary atresia with Intact Ventricular Spectrum – occurs when the valve that controls the flow of blood from the right ventricle to the main pulmonary artery doesn’t develop properly hence hindering blood flow from the right side of the heart.
Doctors informed her parents that the condition was irreparable and that life expectancy for babies with pulmonary atresia is terribly low. But Mrs. Summerhill insists that they were ready to raise their child despite being worried about the quality of life their daughter would have.
It was important to them that Harriet is given a chance, even with the odds stacked against her and having to undergo so much. The alternative of comfort care – natural death after birth – was absurd because if they were going to keep the baby then obviously they would do their best to keep her alive.
The couple settled for the last choice: an initial three-stage open heart surgery which would give Harriet the best prospect of survival. The anxious parents saw this as their best alternative even though it required a number of surgeries: a first surgery soon after birth, the second when the baby was three to nine weeks old and the third between the ages of three and five.
Mrs. Summerhill has acknowledged that it was very difficult to come to terms with the fact the baby would go through so much and they still might have lost her, but at least she would be given a chance. Baby Harriet had put on enough weight by January 13, and she was ready for her first surgery.
It was done at the University Hospital of Wales to Bristol Children’s Hospital. Mrs. Summerhill was glad to take her daughter home at 10 weeks despite the frightening process and was thankful to be home and to share her own bed with her baby for the first time. Harriet’s second surgery took place when she was eight months old.
She got through it despite some serious complications. Her development had been so slow up to that point. But after the operation, she made her parents proud by rolling, standing, and walking all within three months. Her parents were delighted.
The probability of a child pulling through the three stages of surgery is about 70% but there is not enough information concerning survival rates of children with pulmonary atresia past their teenage years and early 20’s But Harriet is a fighter and her parents are optimistic about her chances and they will continue doing their best for her.
Despite this, the uncertainty of their child’s future is scary.
According to her mother, ‘She struggles with energy and gets tired quickly but is learning to pace herself so that she can still enjoy being busy and active.’ Harriet’s parents are hopeful that she will qualify for a heart transplant. Many children don’t get this opportunity as they become too sick to get the chance. The main goal for Harriet’s family is to keep her as healthy as possible as they await her third open heart surgery when she is about five.
They acknowledge the tough times ahead but have chosen to enjoy watching their daughter grow and develop and make the most of her life. After all, they have been through, with more still to come; they celebrate every moment of Harriet’s life.