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• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH12 >> Explains that her two year old daughter was okay about being at the hospital outpatients but she didn't like having the Echocardiogram done.

Their daughter was diagnosed with ostium primum Atrial Septal Defect (ASD). Treatment: Surgery at 18 months old to close the hole with a dacron patch. Stitches in the mitral valve. No further surgery planned. Current medication: none.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH23 >> Explain that their baby daughter doesn't get too upset by tests and examinations but it has become a little harder to get tests done as she has become

Caitlan was diagnosed with Pulmonary Atresia, VSD and Dextro cardia. Treatment: closed heart surgery at 48 hrs old and open heart surgery at 11 months old. Further surgery planned when their daughter is older. Current medication: none.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH06 >> Said he found it difficult to handle the situation or to talk to people it until their baby was born.

Their daughter was diagnosed with Hypoplastic Right Heart Syndrome, Tricuspid Valve, Coarctation of the Aorta, Transposition of the Great Arteries. Treatment: A banding operation at 22 hrs old, repeated at 1 week old. A cardiac catheter at 10 months and a CP shunt at 1 yr. Further palliative operations planned. Current medication: Phenoxybenzamine Hydrochloride.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH10 >> Describes feeling numb, devastated and shock when his wife told him that their unborn baby had a heart defect.

Their son was diagnosed with Transposition of the Great Arteries, ASD, VSD, Atrial Isomerism and Pulmonary Stenosis. He has Dextro cardia and Bronchial Isomerism. Treatment: none given yet, surgery planned for when their son is older. Current medication: ventolin & flixotide for asthma.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 4-5 >> Interview CH17 >> Describes his feelings when they were told his son would need open heart surgery which they had been hoping wouldn't be necessary.

Their son was diagnosed with a ventricular septal defect (VSD). Treatment: surgery to close hole and repair leaky valve at 3½ years old. No further treatment planned. Current medication: none.

• Heart disease >> Parents of children with congenital heart disease >> Child aged under 1 >> Interview CH03 >> Fathers may feel they need to hide their feelings and be strong for their partner.

Their son was diagnosed with Tricuspid Atresia, a large VSD, ASD, small right ventricle and small pulmonary artery. Treatment: Modified BT Shunt and Atrial Septostomy at 24 hrs old. Cardiac catheters planned. Further operations planned when their child is older. Current medication: diuretics, aspirin, sytron, anti-reflux and lactulose.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH08 >> Explains that finding out at 20 weeks that her baby had a serious defect she didn't feel able to plan for his birth or the future until he was about t

Daniel was diagnosed with Tricuspid Atresia, Hypoplastic Right Ventricle, VSD and Transposition of the Great Arteries. Treatment: cardiac catheter at 24 hrs old, banding operation at 2 weeks old, followed by 1st stage Fontan at 10 months old. Further catheters and surgery planned. Current medication: warfarin.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH06 >> Describes their feelings when people stared at their daughters scar on her chest while she was at the swimming pool on holiday.

Their daughter was diagnosed with Hypoplastic Right Heart Syndrome, Tricuspid Valve, Coarctation of the Aorta, Transposition of the Great Arteries. Treatment: A banding operation at 22 hrs old, repeated at 1 week old. A cardiac catheter at 10 months and a CP shunt at 1 yr. Further palliative operations planned. Current medication: Phenoxybenzamine Hydrochloride.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 4-5 >> Interview CH18 >> Explain that information passed on to others about their son's heart condition had become distorted.

Their son was diagnosed with mirror image, transposition of the great arteries, left sided valve atresia and pulmonary stenosis. Treatment: A BT Shunt at six months old, followed by the Stage 1 Glenn procedure at 4.5 yrs. Cardiac catheter operations every 2 yrs. Further surgery is planned. Current medication: aspirin.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH22 >> Explain that when their daughter was taken in for emergency surgery, they let others know by telling one friend who told others and who kept everyone

Millie was diagnosed with Coarctation of the Aorta and a VSD at 3 weeks old. Treatment: she had closed heart surgery to repair the coarctation and a band was put around the pulmonary artery at 3 weeks old. At 7 months old she had open heart surgery to repair her VSD. Current medication: captopril.

• Heart disease >> Parents of children with congenital heart disease >> Child aged over 5 >> Interview CH24 >> Describes how they overcame the problem when senior members of her family disagreed with the treatment her son was being offered for his heart conditi

Their son was diagnosed with Bradycardia during pregnancy. A VSD, PDA and a double aortic arch were diagnosed when he was 3 weeks old. Treatment: surgery at 8 weeks old to correct double aortic arch and to close pulmonary duct artery. Increasing drop in heartbeat (Bradycardia) led to emergency pacemaker fitted at 6yrs old. Current medication: none.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 4-5 >> Interview CH17 >> Describes telling friends who were shocked and frightened for them and explains that when one friend was honest with her about how she felt it was a g

Their son was diagnosed with a ventricular septal defect (VSD). Treatment: surgery to close hole and repair leaky valve at 3½ years old. No further treatment planned. Current medication: none.

• Heart disease >> Parents of children with congenital heart disease >> Child aged over 5 >> Interview CH02 >> She stopped telling people about her baby's heart condition during pregnancy because it would upset them.

Thomas was diagnosed with Tricuspid Atresia, Transposition of the Great Arteries and Coarctation of the Aorta. Treatment: An arterial switch operation at 36 hrs old followed by a BT shunt at 5 months, a Kawashima at 33 months and a Fontan at age 7. Current medication: wafarin.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH14 >> Describes the different reactions of friends and family and that they found it difficult to understand when information about her baby's condition or

Sam was diagnosed with a complete Atrioventricular Septal Defect (AVSD), pulmonary atresia and right atrial isomerism. Other problems: No spleen and mal-rotation of the gut. Treatment: A BT shunt at 24 hrs old, followed by the Glenn procedure at 6 months. More surgery planned. Current medication: warfarin, penicillin.

• Heart disease >> Parents of children with congenital heart disease >> Child aged under 1 >> Interview CH03 >> Explains that it was difficult to know what to tell work colleagues when they were in hospital after their baby was born and outcomes and treatment op

Their son was diagnosed with Tricuspid Atresia, a large VSD, ASD, small right ventricle and small pulmonary artery. Treatment: Modified BT Shunt and Atrial Septostomy at 24 hrs old. Cardiac catheters planned. Further operations planned when their child is older. Current medication: diuretics, aspirin, sytron, anti-reflux and lactulose.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH06 >> Explain that some family and friends didn't understand the extent of their daughter's heart problem. Some people were afraid to ask.

Their daughter was diagnosed with Hypoplastic Right Heart Syndrome, Tricuspid Valve, Coarctation of the Aorta, Transposition of the Great Arteries. Treatment: A banding operation at 22 hrs old, repeated at 1 week old. A cardiac catheter at 10 months and a CP shunt at 1 yr. Further palliative operations planned. Current medication: Phenoxybenzamine Hydrochloride.

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• Heart disease >> Parents of children with congenital heart disease >> Parent's reactions >> Parent's reactions

Parent's reactions

• Heart disease >> Parents of children with congenital heart disease >> Child aged 4-5 >> Interview CH17 >> Describes how their daughter was looked after and how she coped when her twin brother was in hospital but how difficult it is to be sure how a child i

Their son was diagnosed with a ventricular septal defect (VSD). Treatment: surgery to close hole and repair leaky valve at 3½ years old. No further treatment planned. Current medication: none.

• Heart disease >> Parents of children with congenital heart disease >> Child aged over 5 >> Interview CH25 >> Explains that she only found out from a friend at a later stage how devastated her mother was by her child's diagnosis.

Andre was diagnosed with Hypertrophic Cardiomyopathy at 3 months old. Treatment: he takes Verapamil and has to limit his physical activities. He has annual check ups. Her 6 month old daughter has a VSD, diagnosed when she was 3 months old. It is expected that the hole will close on it's own, without the need for treatment.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH22 >> Describe the impact their daughter's diagnosis had on both sets of parents.

Millie was diagnosed with Coarctation of the Aorta and a VSD at 3 weeks old. Treatment: she had closed heart surgery to repair the coarctation and a band was put around the pulmonary artery at 3 weeks old. At 7 months old she had open heart surgery to repair her VSD. Current medication: captopril.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH10 >> They describe their parents' reactions and explain that one of them found their reactions comforting and the other found them frustrating.

Their son was diagnosed with Transposition of the Great Arteries, ASD, VSD, Atrial Isomerism and Pulmonary Stenosis. He has Dextro cardia and Bronchial Isomerism. Treatment: none given yet, surgery planned for when their son is older. Current medication: ventolin & flixotide for asthma.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH08 >> Encourages other parents to be positive and have hope if they discover their child has a heart defect.

Daniel was diagnosed with Tricuspid Atresia, Hypoplastic Right Ventricle, VSD and Transposition of the Great Arteries. Treatment: cardiac catheter at 24 hrs old, banding operation at 2 weeks old, followed by 1st stage Fontan at 10 months old. Further catheters and surgery planned. Current medication: warfarin.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 4-5 >> Interview CH09 >> Explains why she thinks it was a mistake not telling her toddler that he was going in to hospital to have an operation.

Their son was diagnosed with Coarctation of the Aorta, PDA, Bicuspid Aortic Valve, Hypoplastic Aortic Arch, VSD, Mitral Stenosis and Pulmonary Hypertension. Treatment: Surgery at 3 weeks old, mitral valve replacement at 2.5 years. 2 cardiac catheterisations at 2½ yrs and at 3½ yrs. Further mitral valve replacement planned. Current medication: warfarin.

• Heart disease >> Parents of children with congenital heart disease >> Child aged 4-5 >> Interview CH26 >> Encourages others to have hope in the many successful treatments available nowadays for children with heart conditions.

Her daughter was diagnosed with Partial Ventricular Septal Defect after GP noticed a heart murmur when she was two. Treatment: open heart surgery to repair hole and mend the valve at 2½ yrs old. Pacemaker fitted 5 days after surgery. Possibility of further surgery in the future. Current medication: none.

• Heart disease >> Parents of children with congenital heart disease >> Child aged over 5 >> Interview CH24 >> She showed her son photos of when he was intensive care as a baby when he was over six years old and she describes his reactions.

Their son was diagnosed with Bradycardia during pregnancy. A VSD, PDA and a double aortic arch were diagnosed when he was 3 weeks old. Treatment: surgery at 8 weeks old to correct double aortic arch and to close pulmonary duct artery. Increasing drop in heartbeat (Bradycardia) led to emergency pacemaker fitted at 6yrs old. Current medication: none.

• Heart disease >> Parents of children with congenital heart disease >> Child aged over 5 >> Interview CH19 >> She describes how people reacted towards her after her son's death and says that it was important that people continued to talk to her about Luke.

Luke (1996-2002) was diagnosed with coarctation of the aorta, transposition of the great arteries, VSD, pulmonary stenosis and double inlet left ventricle. He died when he was nearly 6 yrs old after his fourth operation (not including cardiac catheters). He had epilepsy and asthma and was quite ill at times. Medication: warfarin, medicines for asthma and epilepsy, diuretics after operations. Family live 15 miles from the specialist hospital.

• Heart disease >> Parents of children with congenital heart disease >> Bereavement, sources support & reactions of others >> Bereavement, sources support & reactions of others

Bereavement, sources of support and reactions of others