July 9, 2007
Baby Abigail makes good recovery and looks forward to her third birthday
A Leicester couple who feared they would lose their baby daughter before she was born because of a serious heart condition are about to celebrate her third birthday. Doctors found Abigail Herus had a life-threatening heart condition in the womb. After she was born by emergency Caesarean eight weeks early, her life still hung in the balance so her parents had her christened in intensive care.
But now, thanks to excellent care at Glenfield and Leicester General hospitals, she is amazing everyone who knows her.
Her mum Marci said: “She is like a breath of fresh air. She is always happy, never stops laughing and loves to play with her big sister Caitlin.”
Abigail, who will be three on July 22, suffers from dilated cardiomyopathy, a disease of the heart muscle that causes the heart to enlarge and pump less effectively.
Doctors found she had a heart problem when Marci, from Birstall, was 32 weeks pregnant.Marci said: “I noticed she wasn’t moving around so I had several tests and ultrasounds which showed she had fluid in her stomach and that her heart was not working properly.
Marci said: "I was told I needed an emergency Caesarean the next morning, but that she might not last the night. It was the longest night of my life and I was willing her to move and let me know she was all right. But I was sure that if she lasted the night she would be ok.”
She was born the next day weighing 51bs and 3oz and Marci, 30, and dad Mark, 36, a purchasing manager were only allowed to see her for a few minutes before she was transferred to Glenfield Hospital’s paediatric intensive care unit.
At Glenfield she was diagnosed with severe dilated cardiomyopathy and hydrops, an abnormal accumulation of fluid. When the hospital had drained all the fluid from Abigail’s body her weight went down to 4lbs.
Marci said: “With the support of our family, our local church and the nursing staff we decided to have her Christened while still in her incubator on a ventilator and with all her leads and tubes.”
Abigail also suffered from other conditions including air and gas around her lungs, a serious acquired infection in her intestines, and underwent surgery to close a duct in her heart that did not close after birth.
Marci said: “It was at this stage she started to surprise everyone and a few hours after her surgery we were able to hold her for the first time which was a lovely feeling.”
When she was two weeks old she was taken off her ventilator. She didn’t like being given air, so was taken off this too. By the time she was three weeks old, doctors said her problems from being premature were greater than her heart problems.
So she was transferred to Leicester General’s intensive care neonatal unit for what the hospital termed “fat farming”.
Marci said: “We were happy that her heart was no longer the main problem but very upset to be leaving the staff we had spent so much time with.”
At Leicester General she was fed high calorie milk or breast-milk every four hours and started to gain weight steadily.
Marci said: “Apparently heart babies are often reluctant to feed, but this was never the case with Abigail. We were shown how to put a tube into her stomach to feed her if this became necessary, but luckily her appetite has always been good and we have never had to do it.”
When she was six weeks old, the family were told they could take her home. Marci said: “It was the greatest day of our lives but it was scary and we felt a great responsibility with all the medication she was taking. But it’s a normal part of our lives now.
She added: “At first she was in and out of hospital quite a lot as her medication was changed and she had problems with low blood pressure, but now she is only seen every three months though she will continue to have to take a long list of medications
“But she is amazing and we are so glad she has been given a chance thanks to all the consultants and their never ending faith.
“She is a very determined little girl who is very independent and has taught us not to take things for granted. She is learning to talk, did well with potty training, is due to start pre-school in September and never fails to amaze us with the things she can do.”
The family have been supported by the Cardiomyopathy Association, a charity that offers information and support to affected families. The condition can cause sudden death if not diagnosed in time, and it is often inherited.
So the association campaigns for more heart checks for close family members of those affected and genetic testing so those at risk can be treated early and lives saved.
Abigail’ sister Caitlin, 5, will have regular heart checks to ensure she remains well.
For more information about cardiomyopathy, contact the Cardiomyopathy Association on freephone 0800 0181 024 or see the website www.cardiomyopathy.org
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Note to Editors
For more information, contact Sarah Dennis, Information Manager, Cardiomyopathy Association, 01494 791224 or email sarah.dennis@cardiomyopathy.org
Dedicated to Damian McLoughlin, who died age 20 of cardiomyopathy. This site is supported by Damian's family and friends.
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