Notes For Parents

Being diagnosed with TTTS can be the beginning of an emotional and confusing time. Many parents go through diagnosis and treatment and end up with healthy twins. It would be wonderful, of course, if this could happen in every single case, but sadly it does not.

Each case of TTTS can be different, and as your consultant will state, there are no guarantees of success when you agree to undergo treatment. But with no treatment around 80% of pregnancies lose both babies.

Sometimes a course of treatment can appear to be progressing well, only for additional problems to manifest themselves.

Your consultant will be available to answer any questions you may have during your treatment, and he or she should be your first contact for any concerns.

At twin-2-twin, we are attempting to rectify this common complaint and ensure that all maternity hospitals are aware of the condition and how to diagnose it. Every hospital has the equipment to suspect a problem and if they have doubts then should refer you to a fetal medicine specialist. Any hospital can instigate an easy protocol to ensure that no cases are missed, and all should do so. If your case of TTTS was missed, then you have the option of making a complaint to your hospital to ensure that future cases are dealt with correctly. We are available to assist you with this procedure.

Again, this is all too common, and frankly there is no excuse for it. All parents with TTTS should be given the option to undergo treatment and be told where different treatments are available. Your hospital needs to be told that treatment is available, and where you can be referred.

This is often determined by where you live or which treatment centre you attend. It can also depend on the condition of your babies. Some offer one treatment only, others offer more. Your consultant will be able to advise on alternative treatments, and will be able to refer you if that is your wish.

You should first voice any concerns with your consultant directly. If you are uncomfortable with the thought of doing this, then you can ask a family member, friend, or your GP to do it for you. Everybody has the right to a second opinion, and any hospital or treatment centre will be able to arrange this if you request it. Remember, however, that time is often of the essence when treating TTTS.

Each hospital has a procedure for dealing with complaints, and information will be made available to you about this. Most claims for medical negligence are not successful, and a long drawn out legal process is often not the best way to overcome grief. Questions, however, often need to be answered concerning mistakes you think may have been made. We are available to assist with this and can often help to resolve the matter without your needing to recourse to legal action. For extremely serious cases, we have available a legal team specialising in medical matters and who have knowledge of TTTS cases. They will be able to sympathetically advise you on options free of charge.

Other organisations that have excellent advice and support facilities to offer. You may contact MBF, TAMBA, or SANDS, all on our links page.

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