Family planning and pregnancy

Clare Waite

Clare Waite is the Clinical Nurse Specialist at the Haemophilia Centre, Royal Prince Alfred Hospital, Sydney

Thinking of starting a family or you or your partner is pregnant? Congratulations, but there are some things you may need to think about and your Haemophilia Treatment Centre is there to assist.

Before the birth

Ideally planning for the pregnancy and birth would begin before you or your partner become pregnant – but if you or your partner are already pregnant, don’t worry – your Haemophilia Treatment Centre is there to help you.

• Does your partner have a good understanding of haemophilia/von Willebrand disease (VWD)? It may be helpful for them to have education from the haemophilia team.
• Genetic counselling is offered at most hospitals and is extremely important. You as a person with haemophilia or VWD or who carries the gene may be at ease with having a child with a bleeding disorder but your partner may not or have little understanding of what this could mean for themselves and the child. This is the time for them to learn what it means for them to have a child who has haemophilia or VWD or who is a carrier. Their questions and any fears can be addressed. It is important that both you and your partner have a stress free pregnancy so if any anxiety you or they may have around the bleeding disorder can be dealt with early or pre-pregnancy, the better the pregnancy will be.
• IVF (in vitro fertilisation) may be an option you wish to consider, for example, using IVF technology with pre-implantation genetic diagnosis (PGD) to test embryos for the family gene alteration before embryo implantation and pregnancy; or the option of artificial insemination after sperm washing for HIV. Sex selection may also be another option you wish to discuss, for example, to choose not to have a boy if the mother carries the gene; or not to have a girl if the father has haemophilia.
• Seek advice from your haemophilia team on delivery and ask your obstetrics and haemophilia teams to liaise with each other. What are your birth options? Who must be informed that your child may have haemophilia/VWD or be a carrier? Most adult or paediatric Haemophilia Treatment Centres will write a referral for you to the obstetrics department of the hospital where your baby will be delivered. It is also strongly advised that you deliver your baby in a major hospital, which may require you to travel to your nearest city.
• If you don’t already have one, now is the time to get a GP who the whole family can see.

After the birth

• Importantly don’t forget post birth, if you have a child with a bleeding disorder, you should become familiar with your paediatric Haemophilia Treatment Centre. Children love to have accidents!
• Be aware the post-natal depression does not only occur in mothers. Fathers may experience it too and it is more common in fathers who have a chronic health disorder such as haemophilia and VWD. Help is there.

Your health

Preparing for a family is also a good time to make sure you are in the best health you can be.

• Make an appointment to see your haematologist and haemophilia nurses and social worker.
• Take some time to think about how you will manage your treatments and care for a newborn.
• Are you conscientious with sharps disposal? Home must be a safe environment for the baby or child as they grow up.
• Is your joint health the best it can be? Have you seen a physiotherapist recently? Are you exercising?
• Do you have hep C? This is the perfect time to get treated. The new treatments are effective, have minimal side effects and are relatively short in duration. Your Haemophilia Treatment Centre may help with referrals and support. Feedback for patients who have undergone treatment is that it is fantastic, easy to tolerate and life changing.

A little preparation goes a long way – and now to enjoy the rollercoaster ride which is parenthood!