Information about heart and lung transplants in people with Down's Syndrome.
     
     
     
     
     

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Heart / Lung Transplants

With advances in technology and understanding, where necessary, surgical correction is possible for the majority of babies born today with cardiac defects and Down's Syndrome. There are of course a few cases where the nature of the defect adds particular complications and surgery may be inadvisable. For these babies and for those teenagers and young adults who for whatever reason did not have corrective surgery, a heart / lung transplant is the only remaining option.

Several families in this situation have been advised that someone with Down's Syndrome would not be considered for transplantation and there has been considerable media coverage surrounding this issue. The reason generally given is that a patient needs to be able to understand and be compliant with the required procedures, particularly the drug regime needed after the surgery, and that someone with Down's Syndrome would not be able to fulfil these criteria. This is of course making a generalisation and not treating each person as an individual and assessing them on their own ability. Most transplant centres do assess each patient and family individually, the problem is often in getting a referral from the cardiac unit.

In fact, transplantation and the procedures surrounding it, is another treatment which can bring very many problems. It is not the 'miracle cure' hoped for, and some families who have been through the assessment process have eventually decided against transplantation, once they had a better understanding of everything involved.

Assessment

Having initially been referred for assessment, the patient has a stay in hospital for several days when a series of clinical tests are undertaken. There are also in depth discussions with all of the family, which take place with several professionals, whose job is to ensure that transplantation is the right decision. They have to be sure that all the family are aware of the impact it will have on their lives and that their expectations are realistic.

Going on the list

Being assessed as suitable for transplantation does not mean that the patient's name immediately goes on the transplant register. Due to the shortage of donor organs, the risks of the surgery, side-effects of the drugs and problems of having suppressed immunity for the rest of their lives, patients are only placed on the list when their condition dictates that transplantation is absolutely necessary.

Waiting for donor organs

Having been placed on the list, the waiting for suitable organs begins. Organs can become available at any time, so the family has to carry a bleeper with them so that they are contactable at all times. There is a shortage of donor organs and it is not uncommon to have to wait longer than a year. Even if a patient is called to the hospital, it is still possible that one or more of the donor organs may be damaged or unsuitable and the operation may have to be cancelled.

The operation

The surgery generally takes about five hours, during which time the patient will be on a heart-lung by-pass machine to do the work normally done by the heart and lungs. Afterwards they will be in intensive care on the ventilator and in hospital for weeks before being fit for discharge home. Once at home, there are frequent visits to clinic, which might be a long distance away.

Afterwards

Everyone reacts differently to transplantation but there may be side effects to the drugs which can be distressing:

  • Nausea
  • Increase in body hair
  • Steroids if used can make the face take on a 'moon' shape
  • Swollen gums
  • Shaky hands

Drugs need to be taken regularly for the rest of life to prevent rejection and this also requires blood tests to check levels, although these may only be every 6-12 weeks after the first 3 months.

There will be regular check ups and tests at the transplant centre to check bloods, heart and lung function and drug levels. These drugs help to prevent the body rejecting the new organs by suppressing the immune system. This can make the patients more vulnerable to infections, cause long term damage to kidneys and there is a small increased risk of developing a tumour.

Things you might want to think about

  • Being accepted for transplantation does not guarantee that donor organs will be found in time
  • There is no guarantee that the donor organs will work
  • There is always a risk of rejection despite the drugs
  • How will you and the rest of the family cope with it?
  • Although transplantation may give your child a few more years it is a treatment not a cure. Life expectancy after heart / lung transplantation is unpredictable, but may range from 5 to 10 years.

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