Chairs: Darren Ravenor and Belinda Atim, PW
Speakers: Stuart, Beatrice
Facilitator: Jo Robinson, THT
Rapporteur: Harriet Nyambalirwa, UKC
This workshop was attended by 16 people (which included some couples)and gave participants the chance to discuss mother-to-baby transmission risk, sperm-washing and fertility treatment.
Stuart is 29 and living with haemophilia, HIV and HCV, which he contracted as a result of using unsafe blood products in 1984. He says he is also half expecting to get CJD at some point in the future. Stuart informed the group that many men with haemophilia are considering whether and how to have children. Some are choosing to conceive naturally and others using a sperm washing procedure. Stuart and his partner of 10 years decided to start a family but have had a plethora of questions, concerns, moral dilemmas and decisions to consider in the whole process:
Both want a child
One questions the success of assisted conception (10%) and the traumatic process involved, yet the other is unwilling to choose any route no matter how low the risk, if alternatives existed that are virtually risk free
One was comfortable with transmission rate risk in natural conception (0.1%-0.2% risk of transmission per exposure –Mastro, 1996) but the other would do whatever possible to limit risk to partner and child under all circumstances
One knows that on average there is less than 8% risk of transmission per natural conception, which can be reduced by monitoring viral load, timing of intercourse, and being aware of the influence of other STI’s (Quinn et al., 2000) whereas the other considers assisted conception process the only option as long as age and health are on their side.
Stuart thinks the whole procedure is expensive and ineffective.
Together they decided to choose the option of assisted conception through sperm washing a year ago but progress has been slow. Stuart first tried to book a consultation at the Assisted Conception Unit and each time was referred to different people who told him different information. He finally managed to book an appointment for the end of last year. A couple of weeks before his appointment he phoned to confirm his appointment and was told that both he and his partner would need a full sexual health check up before the consultation.
After getting this done Stuart tried again to get an appointment but had no success for over 4 months. He had been asked for and had provided letters of referral from his consultant, been told an appointment had been sent in the post which he didn’t receive and eventually sought the help of a specialist haemophilia nurse to try and sort things out. By the time this was done it was over 6 months since the couple had undergone their sexual health check ups and so they would probably have to go through the whole procedure all over again, which was very frustrating.
Stuart recently gave samples for a semen analysis as he says “to check if the little blighters aren’t too knackered from all the anti-HIV drugs over the years”. So despite all the tests, letters and phone calls, one year later Stuart and his partner were still waiting for their first consultation.
In conclusion Stuart felt that people should think about all their options and suggested the following.
Be aware, in great detail of the process involved
Be empowered in the process
Consider the timescale that might be involved
Consider the low success rates involved
Consider both the financial and emotional investment involved
Beatrice has been diagnosed with HIV for 12 years now and is a mother of four children. She talked about how in the early days she had conceived through unprotected sex but wanted a termination due to fears about her health and also concerns that the baby might be HIV positive. Beatrice was able to see a counsellor and learned that it would not affect her health badly. She was happy to know that but still decided to go ahead with a termination because she was not ready and she had also just started a new job.
When she did feel ready to have a baby, Beatrice discovered that her doctor wanted her to take HIV drugs but she was reluctant to do this. She was also worried about giving birth by caesarean section and had questions like “What is the effect of toxic drugs on the baby?”,“Will the wound heal?" What if the baby is HIV positive? How will I handle it?”
In the end Beatrice decided to take the medication and to have a caesarean section. It wasn’t as bad as she had expected and after the birth she exercised to help her heal faster.
The other challenge she had to face was the fact that her family expected her to breast feed and her existing children wanted to see her do this. This was a traumatic experience for Beatrice, as she had to lie to everyone because she wasn’t able to be open about HIV then. With time, she got used to the idea of not breast feeding; it wasn’t really a question of choice!
When Beatrice conceived again, she was faced with a difficult decision, because she hadn’t planned to have a baby at the age of almost 40. She did consider having a termination but decided against this because it was too late in medical terms and she would have to be induced; and could not handle the trauma involved. Even though she conceived naturally on both occasions it was always important to practice safe sex throughout the pregnancy as the immune system is even more suppressed.
Beatrice is now a single parent and says that having a family is a challenge, and priorities often change. Her children come first and she is committed to guiding and looking after them even when not well enough. She says that when her children tell her, “I love you mum” it makes her life worthwhile.
There was then the opportunity for participants to ask questions and discuss the issues arising with the speakers and facilitator.
£3,000 pounds per process. Some health authorities may pay for it. In future, the NHS might pay for the first sessions for everyone
Does HIV affect your fertility?
Maybe but could be other thing such as:
Stress, which can be a cause of low sperm counts in men hence infertility
Genetic factors
HIV drugs, libido may be affected and men may have low testosterone levels
Recreational and other drugs
Alcohol, too much may damage sperm
How does someone know if they are infertile?
If a woman is not pregnant after several attempts, then it is a good idea to consult a gynaecologist or doctor. If there are problems with menstrual cycles, this could be an indicator of a fertility problem.
Is there any combination therapy that can affect the foetus?
Some drugs cannot be taken when pregnant so it is important to speak to an HIV doctor when planning a family
What are the risks of mixed feeding when a mother is positive (bottle and breast feeding)?
There are increased chances of passing on the virus to the baby. Bottle feeding is strongly recommended.
Yes, they would try a natural conception
Yes. Also hepatitis C can be passed on to the baby and the risk is even higher with a high viral load and more of a risk than HIV. It is a good idea to look into treatment for hepatitis C before planning for a family.
One participant said that having a child made him more stable than he was before.
Beatrice said having children made her more focused. The zeal of watching them grow gave her reason to live especially when she suffered trauma following a tragic road traffic accident.
Having a family poses big challenges for couples/individuals involved, it’s important to gather as much information as you can, choices made by one individual/couple will not necessarily be suitable for another.
Sperm washing is expensive, a difficult process to undergo and success rates are poor
Not being able to breastfeed can be very traumatic and it is difficult to explain the reasons to children and others unaware of a woman’s HIV status
HIV, ART, drugs, stress and alcohol may all affect fertility
Having a family can be rewarding and a stabilising influence
Sperm washing should be available free of charge to men living with HIV
There should be better communication and coordination between HIV, sexual health and fertility services
There should be more information available about the risks of transmission (male to female and female to male) to help partners of people with HIV, be they HIV positive or HIV negative, and people with HIV themselves around making decisions about natural conception
This workshop was evaluated by 11 people. The youngest participant was 27 and the oldest was 45. The average age was 37
Gender
8 female, 2 male, 1 not stated
Ethnicity
7 black African, 3 not stated, 1 white
Sexuality
10 heterosexual, 1 not stated
Usefulness
Very useful |
Useful |
Not useful |
64%(7) |
36% (4) |
0% (0) |
NOBODY said not useful
5 people set themselves action points.
Encourage and help friends with domestic problems
More thinking!
Think and plan
Have more and more and more
Have more kids
Move on to Scottish Participants Meeting