No one, least of all me, has the right to tell you how many children you should have. That decision is yours and yours alone.
It's easy for outsiders to understand your fears that your next baby will also have problems. To them, the obvious solution may be to avoid the risks and have no more children. Perhaps only other parents who have suffered the same heartaches can fully appreciate how much you may want another child even if the odds are stacked against you. Perhaps you feel a failure for producing an imperfect child so you want to try again to prove you can be like everyone else. Perhaps your special child is dying or already dead and you cannot bear to be left with empty arms. Perhaps you desperately want an ordinary child who can grow up, marry and give you grandchildren. All these feelings are natural and very common.
It's very important to make the right decision about having another baby: a decision you can both bear to live with. The first step in making it is to ensure you have all the information you need. Probably you were told about any risk to further children when you were first given the diagnosis but the details may be a little fuzzy by now or completely forgotten. If you are unsure of the risks, ask your doctor to arrange for you to have genetic counselling. This may be given by your consultant or a specialist genetic counsellor and consists of a thorough explanation of the chances of your next child having similar problems to your previous one.
Feel free to ask as many questions as you like. The mechanics of inheritance are confusing to everyone when they meet them for the first time so no one will think you stupid for not understanding everything straight away. If possible, get a written explanation as well - perhaps the diagrams the doctor drew to illustrate her explanation or a leaflet from your voluntary society. It will jog your memory when you are talking things over at home or explaining the situation to relatives.
It may be possible for tests to be performed when you are pregnant to tell you if the new baby is affected or not. One common test involves taking a sample of the fluid surrounding the baby (amnioscentesis), but new methods are constantly being developed. The range of conditions which can be detected before birth is also increasing all the time.
Your doctor may be unwilling to perform these tests if you only want them for your own peace of mind and definitely do not want a termination (abortion). In this case, ask to be referred to another doctor who would be willing to help.
If the tests show all is well you are spared months of worry but if they show the new baby has problems, you have the choice of continuing the pregnancy or having a termination. If you find yourself in this situation, make sure you have all the facts about both alternatives before you make up your mind. Some parents feel they would be denying the worth of their special child if they terminated a pregnancy because the new baby had the same condition. That is obviously a very personal opinion but it is worth considering how you would explain a termination to your special child should he ever find out about it. Don't be pressurised into a decision which feels wrong - it is you who will have to live with its consequences, not the doctors.
Deliberately becoming pregnant while relying on pre-natal diagnosis to ensure you have a healthy baby is not a decision to be taken lightly. The results of some pre-natal tests are not available until your pregnancy is well-advanced and a late termination will mean you have to undergo labour to deliver the baby. Also, although the idea of an abortion may seem acceptable beforehand, your views may change once you are pregnant. Some mothers find that, by the time the test results come, they are already too attached to the baby they are carrying to be able to agree to a termination.
A possible variation of pre-natal diagnosis is invitrio fertilisation (IVF) where the embryos are screened so that only healthy ones are implanted. This avoids having to have a termination but make sure you find out all the pros and cons before you decide go down this route.
If you have another baby, you will probably be very anxious during the pregnancy even if the chances of the next baby being affected are very low. You have been unlucky once so you will never be completely confident again.
Once the baby is born, you may know straight away if all is well or you may have to await the results of tests or just watch anxiously for early symptoms. Whichever is the case, think carefully before agreeing to stay in hospital for more than the minimum period unless it is essential for medical or practical reasons. However well-meaning the hospital staff are, they may not appreciate the depth of your anxieties and may assume all your emotions are merely "baby-blues". This is a time when you and your partner need to be together as much as possible to support each other.
Even if your new baby is perfectly all right, your joy may be tinged with sadness. Many mothers find that caring for a healthy baby and seeing it develop normally reawakens their grief for their other child for it lets them see what might have been. You should find the sadness goes with time as you begin to appreciate your new child as a person in his or her own right.
If you decide not to risk having another baby but still feel your family is incomplete, adoption may seem the ideal solution. It's no longer as easy to adopt a young baby as it was years ago. Better contraception and easily available abortion have combined with a greater acceptance of single parenthood to drastically reduce the number of babies available. Demand now exceeds supply so social workers can be very selective when choosing which couples to use as adoptive parents.
Nevertheless, there are still children needing homes. If either or both of you are black or of mixed race, you will find social workers keen to consider you as adoptive parents. They like to place children in homes of similar racial background to their own, and there are sometimes more black or mixed race children waiting than there are homes available.
The other children needing homes are the hard-to-place ones. Some are disabled, some are well past babyhood and others are in family groups of two or more brothers or sisters who wish to stay together. Social workers find it more difficult to find new parents for these children so are more open-minded when assessing prospective adopters. In particular, they relax the strict age rules usually applied to baby adoption.
Some of the children have difficult backgrounds involving physical or sexual abuse or neglect and may already have had several changes of home. Taking such a child into your home is a big step which must not be taken lightly. To work with a damaged child and see him or her blossom into a happy, confident member of your family is very satisfying but enormously hard work. It may mean persisting for months or years with little sign of progress or allowing an older child to regress back to babyhood for a while. You need plenty of patience and a good sense of humour.
If you are interested in adoption, you can obtain further information from Adoption UK or you can contact your local social services department or an adoption agency. Some social workers may reject your application because you have a sick or disabled child in your family. This may be because of their own personal bias so, if it happens to you, try another agency.
Some children need permanent homes but also wish to remain in contact with their original families. Others need to stay somewhere for a few days, weeks or months but will eventually either return home or move to a permanent new family. Both these groups of children need foster care.
Fostering means taking a child into your family but sharing him with his natural parents. It means loving a child and letting him go again. Short term fostering, in particular, means never being quite sure how many children you will have next month or next year. Keeping in touch with natural parents involves welcoming people into your house who you might never have chosen as friends, people who may be feeling vulnerable and unhappy.
To foster successfully you need more than a desire for another child. It helps to have a sense of humour, patience, time and a non-judgemental view of other people. Don't let me put you off too much though - you don't need to be a saint. Fostering can be fun and brings its own rewards. We did it for several years and never regretted it. Your local social services department can tell you more about fostering (ask to speak to the fostering and adoption officer) or you can contact the Fostering Network.