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The Choices
Having received the diagnosis and the results of any subsequent tests, the specialist medical team will explain the treatment options available.
In the case of a single ventricle disorder where there is no opportunity of a cure, three treatment paths may be discussed.
Each treatment path is described broadly below. You can find further information by clicking on the links in the side menu bar.
Surgery
What treatments are available to help the baby?
The treatments available for each specific condition will be explained to you by the fetal and cardiac medical teams. A series of operations will be required, soon after birth and in early childhood. They are further described in detail in the
Treatments section.
If we decide that we would like surgery, who will carry out the operation?
There will be a team of cardiac (heart) surgeons at the specialist centre where the surgery will take place. They work closely with the cardiologists (heart doctors) who made the diagnosis during pregnancy and a team of children's nurses who specialise in caring for babies and children who have heart abnormalities.
It is often possible to arrange for you to visit the hospital where the surgery is planned during your pregnancy. this can be extremely useful as it means that you will be familiar with the intensive care unit and the wards where your baby will be treated. Ask the team who have made your diagnosis for more information.
Will we have to travel to receive treatment?
As this type of surgery is very specialised, there are only a small number of children's heart units in Great Britain that have teams with the expertise needed to carry out these operations. It may be necessary to travel to ensure that you receive the highest quality of care.
Following discharge after surgery it may be possible for ongoing medical care to take place in a hospital closer to home.
What are the risks of surgery?
It is important to remember that each and every child is unique and that although the medical team will be able to give expectant parents an idea of the national statistics and unit statistics for surgical success, they may quote a higher or lower risk for each individual child.
Can the baby have a heart transplant?
Heart transplantation is one of the possible treatments for single ventricle heart disease, but it is not offered as a first treatment within the United Kingdom for the following reasons.
- There are very few donor hearts small enough for a baby available in the United Kingdom transplanted hearts do not last forever and there are many risks involved throughout the recipient's life.
- Offering surgery as a first treatment path and retaining transplant as a future option offers a greater chance of a longer life for the child.
For more information on surgery click
here. To read about what to expect when continuing with the pregnancy click
here.
Termination (abortion)
For some parents the knowledge that even following repeated surgery, their child's heart and lifestyle will never be normal means that they choose to end the pregnancy before the baby is full term: termination.
Am I allowed to terminate the pregnancy at this late stage?
In accordance with the law, it is possible to terminate at any point during the 40 weeks if the baby has a condition that would cause serious handicap. This type of extremely serious heart condition would come into this category.
For more information on termination click
here.
Comfort Care
Some parents feel that they could never contemplate ending the pregnancy, but do not feel that they want their baby to go down the surgical route of treatment. In these cases, 'comfort care' for the baby can be offered. This may be explained as "letting nature take its course".
What happens to the baby if we don't want surgery?
If you have decided that you do not wish your baby to have surgery, it is very important that you have time to care for your baby during the duration on your baby's life.
You will be given as much support as possible to enable this to happen from the specialist baby doctors (paediatricians) and their team of nurses on the neonatal unit. These doctors and nurses are skilled in providing tender loving care for babies to keep them comfortable and in supporting parents through this difficult time.
How long will our baby live?
Each family will be given a slightly different answer to this question.
Some babies depend on the circulation that they have inside the womb to keep them alive. as this circulation changes after birth, (see
The Circulation Before Birth), their hearts will no longer be able to supply their body with oxygen and they will die, usually within the first week.
Other children born with only one ventricle will be able to live for longer. The effects of their type of heart defect will slowly affect them.
Your medical team will be able to offer you more information about what would happen to your child if you choose this treatment path.
For more information on comfort care click
here.