Reptroductive Choices - What worked for us

REPRODUCTIVE CHOICES – WHAT WORKED FOR US

Jennifer and Barbara Higgins

The following joint presentation was given by Jennifer and Barbara at the 2nd Southern African conference on Down syndrome and Intellectual disability in Johannesburg. From the discussion during the workshop the main issue which parents seem to be worried about was menstrual management.

Jennifer and Barbara shared their experiences which gave many families hope.

Jennifer My name is Jennifer Higgins. I am 21 years old. I have two brothers Andy and David

The highlights of my life are: Special Olympics Ice Toronto, Canada 1997 - 4th Place Bridesmaid at my brothers wedding in England Special Olympics, Dublin, Ireland, 2003. 2 gold and 1 silver medal 12th World Gymnastraeda Lisbon, Portugal, 2003

Swimming I train at Kloof Swimming Club My coach is Nick Grey I train 6 days a week and sometimes twice a day I swim in lots of galas

Some Swimming Achievements Top swimmer at the 2nd International Down Syndrome Swimming Champs held in Durban, November 2004 KwaZulu Natal Premier Award - Sportswoman of the Year with a Disability 2003 Silver Medal - Midmar Mile - in the Disability Category Part of the South African Swimming Team - INAS-FID - Championships held in Liberec, Czech Republic. 2005

About me

I work at Gulgate Farm (Hammersdale). I stay at the farm during the week. I love the farm. I love to be with all my friends.

I am the only girl at the farm who has periods. All my friends have had “the op”. I asked my mother if I could also have “the op”. My mother and I went to see the gynae.

He was a kind man. He spoke to me nicely. He said that the Mirena is better for me than “the op”.Now I do not have periods and I am happy.

I am happy to be at the conference. Thank you Vanessa for inviting me.

Barbara

Very early in Jennifers life, I was informed by a number of well meaning people. “Jenna will have to have a hysterectomy at an early age - “they” do not cope with periods - and what if she was taken advantage of”.

What did I know at that stage - these folk seemed to be talking from experience!! However, I could not just accept these statements. How could statements be made without giving her a chance. Maybe she would not find coping with menstruation that difficult. As for being “taken advantage of” how would a hysterectomy help? It would not alleviate the pain and trauma that would be associated with being sexually abused. Having a hysterectomy would not guarantee her from being abused. The only advantage would be the prevention of pregnancy. Anyway, I decided to take this one step at a time.

Jennifer started puberty at around the age of 10 (much to my dismay - one thing she was not slow at!). She started menstruating at about 11 ½. I had spoken to her about it so she was prepared when it happened. She coped extremely well - including learning to use tampons (because of her swimming).

As Jenna has already told you in her talk, she was the only girl on the farm, where she works, who had periods - the others have had “the op”, as she puts it. She kept asking me if she can have it too as “I dont like having periods”. (who does?). In view of the fact that she will definitely not be having babies, I decided to take her to see a gynaecologist and discuss things with him.

I was so impressed with the gynaecologist we saw. He treated Jennifer with such respect. He spoke to her directly - I just did some “interpreting” where necessary. Jen amazed me the way she handled the appointment and how appropriate her answers were. He asked her if she wanted to have a baby and her answer was “No”.

He told us that he was not in favour of doing hysterectomies on young people. He then told us about the MIRENA, an IUD device with progesterone. It is fitted for 5 years. The big bonus is that the hormone keeps the lining of the womb thin and thus stops the monthly bleeding. Other advantages of the Mirena are its safety profile, good tolerance, full reversibility and minimal invasiveness.

He explained carefully to Jen about the examination he had to do and why it was necessary to examine her. He asked her whether it was Ok and whether she would like me to be present (which she wanted). On leaving the rooms Jenna said to me: “Lets do it - get it over and done with”

We decided to have the Mirena fitted under General Anaesthetic due to the fact that Jenna is not sexually active and at the same time the gynaecologist would perform a routine “gynae” examination.

Jen was rather apprehensive on the day we went to have the Mirena fitted. Once again, her doctor handled it so well and reassured her. She has taken longer than usual to adjust (from reports that I have had from my nieces and their friends, this is VERY popular amongst the younger generation, I gather). It has taken about 9 months for “spotting” to stop. At first she did have quite a bit of cramping as well. Everything has settled down now.

Both Jen and I are really pleased that we were able to have had this option to choose from. Medical Aid did pay for the procedure - after getting a letter of motivation from her gynaecologist.

WHAT DOES LEGISLATION SAY?

Our national CONSTITUTION makes provision for EQUALITY and HUMAN DIGNITY

Reproductive and contraceptive choices

• In the past many people with disabilities were sterilised without their consent • This is now against the law • We need to look at all the reproductive and contraceptive choices available • The choices should be discussed with the patient, the care giver and the health care professional • Look at the level of disability and the persons ability to understand and to consent • Look at the patients lifestyle and personal preferences • Look at possible side effects and interactions with current medications • Sterilisation is only one option and does not protect against sexual abuse etc

Sterilisation Act 44 of 1998

In persons younger than 18, a sterilisation can only be performed

In life threatening situations (for sure not for menstrual management). If the person has a severe intellectual disability and proof can be given to an independent panel that alternatives re contraception has been investigated and that a sterilisation would be the best option for the individual.

In persons older that 18 years a sterilisation can be performed on a person if he or she is capable of consenting of the procedure.

Consent means consent given freely and voluntarily without inducement. It may only be given if the person has been given a clear explanation re:

The plan and procedure, consequences and risks The fact that consent may be withdrawn The fact that a consent form must be signed