Coping

Joe was diagnosed with Di-George Syndrome and Tetralogy of Fallots. Treatment: one operation at 3 weeks old, 10 months and at 18 months old. Current medication: none.

Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH22 >> They coped in different ways which surprised them.

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 CH11 >> She found that life is better than she thought it would be and that she could cope.

Jack was diagnosed with Supraventricular Tachycardia (SVT), which was later diagnosed as Wolff-Parkinson-White Syndrome. Treatment: none given yet. A radio-frequency catheter ablation is planned at age 5-7 years. Current medication: none, amiodarone until age 1yr.

Heart disease >> Parents of children with congenital heart disease >> Child aged over 5 >> Interview CH02 >> Her son may need a heart transplant in the future but she tries not to worry about it too much and focuses on enjoying the present.

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 CH30 >> Explains that every now and then she has negative thoughts about the future but she tries not to dwell on them.

Their daughter was diagnosed with pulmonary atresia, VSD, and an overiding aorta. Treatment: closed heart surgery (shunt) at 11 days old closed heart surgery (shunt) at 11 months old. Corrective open heart surgery at 2 and a half yrs old. Current medication: none.

Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH10 >> Their son has still to have his first operation and they feel uncertain about the future but cope by enjoying the present.

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 CH18 >> Explain that they try to make hospital appointments fun.

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 under 1 >> Interview CH31 >> His attitude to life has become more philosophical and they now feel confident that they could face any problem as a family and be able to cope with i

Vikram was diagnosed with a large ventricular septal defect (VSD) at 3 months old. He had corrective open heart surgery to close the VSD at four and a half months old. He is recovering well and no further treatment is expected. Current medication: none.

Heart disease >> Parents of children with congenital heart disease >> Child aged over 5 >> Interview CH25 >> They had different ways of coping which she explains can be difficult.

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 CH15 >> Explains that babies and children are very resilient and often cope better than parents do.

Taylor was diagnosed with a complete Atrioventricular septal defect (AVSD). Treatment: surgery at 6 months old. No further treatment planned. Current medication: none.

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 CH26 >> Advises parents to talk to each other about their feelings and to make time for each other.

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 1-3 >> Interview CH08 >> Advises other parents to relax and enjoy their new born baby when they finally get them home.

Heart disease >> Parents of children with congenital heart disease >> Child aged under 1 >> Interview CH03 >> Explains that strangers made comments about her baby's NG tube which she sometimes found upsetting.

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 over 5 >> Interview CH02 >> She found it difficult to cope when she brought her baby home from hospital.

Heart disease >> Parents of children with congenital heart disease >> Child aged 1-3 >> Interview CH11 >> They coped by not talking to each other about their son's illness for the first six months after he was diagnosed.

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