The Hugh Wynter Management Unit, The University Of the West Indies, Mona, Kingston 7

The decision to share

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Table of Contents

Who needs ? ...... 4 What is egg sharing? ...... 4 Who can become an egg sharer? ...... 5 What will the recipient know about me? ...... 5 What will I know about the recipient? ...... 5 What are the screening tests? ...... 6 What about consents? ...... 7 How much counselling will we have? ...... 7 What drugs will I be given? ...... 8 What are the possible side effects of these drugs? ...... 9 Does the egg recovery procedure hurt?...... 9 What are the risks of the procedure? ...... 9 Can this affect my fertility? ...... 10 Can I be cancelled once I have started the injections?...... 10 The egg sharing procedure ...... 11 Can I have ? ...... 12 Will I, (the donor) have any responsibility to any child born? ...... 13 Can I change my mind? ...... 13 How many times can I donate? ...... 13 What costs will I incur? ...... 14 How often will I need to attend? ...... 15 Before you start the programme ...... 15 Commencing the treatment cycle ...... 15 The egg recovery ...... 16 After the donation ...... 16 The first step to donating ...... 17 What to expect after you return the form ...... 18 Meeting the team ...... 19 • The psychiatric evaluation ...... 19 • Counselling as a couple ...... 19 • The implications ...... 19 • The medical consultation ...... 19 • The screening tests ...... 20 Acceptance as an egg donor ...... 20

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Many couples want to have children and find it difficult or impossible to conceive. Some couples may be able to conceive using special techniques using their own and . Others will not achieve their dream of child unless (eggs or sperm) are donated.

You are reading this because you are considering becoming an egg sharer donor. We hope that this booklet will answer all your initial questions that will help you decide whether or not to become a donor.

The desire to have a child is not determined by • Whether or not you are financially wealthy • Whether or not you are employed

• Whether you are young or old

• Your ethnic, social or racial origin • Your educational level

There are THREE forms of egg donation

1. Anonymous 2. Known 3. Shared

This booklet is designed for shared egg donation here at The Hugh Wynter Fertility Management Unit, The University of the West Indies, Mona.

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Who needs egg donation?

There are several factors that may make a couple seek egg donation

There are certain medical conditions that a woman may have no eggs of her own (such as Turners syndrome).

A woman may have to remove her ovaries.

The ovaries may stop working as a result of cancer treatments (radiotherapy/ chemotherapy).

Advanced female age can give rise to poor egg quality and at best less than a 5% chance of a successful .

Those couples that have been through the ART processes may be told that they have poor egg/ embryo quality.

Some women may have or carry a genetic defect that they do not want to pass on to their offspring.

What is egg sharing?

This is a unique form of donation in that two groups of women who need IVF treatment benefit.

One woman chooses to share the eggs collected with another woman. The other woman may be unable to produce or use her own eggs.

Thus, the woman sharing her eggs helps a couple waiting for eggs whilst receiving a more affordable treatment cycle.

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Who can become an egg sharer?

Unfortunately, not all couples will be eligible for sharing. The following conditions are a guideline for the ideal egg sharer ✓ Be Fit and healthy ✓ Be Aged between 18 and 35 ✓ Have Normal periods ✓ Have Normal levels ✓ Have an Acceptable body mass index (BMI) , determined by weight and height ✓ Be in a stable relationship ✓ Have a knowledge of you and your family’s medical history ✓ Be free of any transmissible diseases ✓ Dedicated to see this through to the end ✓ Attend at least one counselling session ✓ Be matched with a suitable recipient couple

What will the recipient know about me?

All the information the recipient receives is non-identifying. We hope to match the donors and recipients both physically and ethnically as much as possible.

What will I know about the recipient?

You will know nothing at all. As we keep the donation anonymous we will not be telling you about the outcome of the donation.

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What are the screening tests?

As the sharer you will be required to do

Blood Tests ▪ Blood grouping ▪ Chromosome studies e.g. Karotyping ▪ Sickle cell (and possibly Haemoglobin electrophoresis) ▪ Hormone profile AMH, hTSH PRL and Day 3 E2, FSH, LH) ▪ Glycosylated Haemoglobin ▪ Hepatitis B and C ▪ HIV ▪ Rubella ▪ VDRL

Uterine Investigations ▪ Saline Infusion Sonogram ▪ Hysteroscopy

The male partner must have at least ▪ A recent Semen analysis (preferably performed at HWFMU) ▪ HIV ▪ VDRL ▪ Hepatitis B and C ▪ Blood group and sickle cell

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What about consents?

After the counselling and screening there will be the egg share agreement that has to be completed. You may voluntarily withdraw from the programme up to the time of the egg collection and this will be honored. Please note that if you choose to withdraw you will no longer qualify for the reduction of cost for your treatment.

How much counselling will we have?

At present we do not have a fulltime dedicated counsellor to see all sharers and recipients. You will be asked to undergo psychiatric evaluation and attend an appointment with our clinical psychologist. After which two counselling sessions with our counselling team. We hope that you will feel free to explore and express your concerns with us in strictest confidence. If possible and required we will try to offer as much counselling as possible.

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What drugs will I be given?

We may also ask you to take the contraceptive pill to help the timing of the donation. There are essentially three forms of medication.

LHRH agonists (e.g. Buserelin) – given as a single daily injection to suppress your natural . (On average these are taken for about 25 days).

FSH (e.g. Menogon, Menopur) – this is given in the form of daily injections that stimulate the ovary. The hope is that several follicles develop. (On average there are 12 days of these injections)

hCG (e.g. Pregnyl, Choragon)- this is the final injection given as a late night injection. This injection is given at a specific time in relation to the egg recovery. This is used to mature the eggs in the follicle and to induce .

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What are the possible side effects of these drugs?

It is rare to see serious side effects. Most women are able to carry on life as normal. The more common side effects reported are

Headaches Discomfort at the Mood swings injection site

Hot Flushes Allergy Vaginal bleeding

Fluid Retention Ovarian Pelvic discomfort HyperStimulation (OHSS)

Does the egg recovery procedure hurt?

Everyone has a different response to the experience. The procedure itself is a minor one for which we give you mild sedation. You will need someone to take you home the afternoon of the egg recovery.

What are the risks of the procedure?

Complications of the egg recovery are rare. As with every operation there is a small risk of infection or bleeding. Usually the will return to normal after the egg recovery but, occasionally it may be irregular for a couple of months. Accidental pregnancy may

The Hugh Wynter Fertility Management Unit, The University of the West Indies, Mona 9 egg sharer info june 2016 Denise Everett Keene June 2016 The Hugh Wynter Fertility Management Unit, The University Of the West Indies, Mona, Kingston 7 also be a risk as we enhance the number of follicles you would naturally produce.

There are a few women that will experience Ovarian Hyperstimulation Syndrome (OHSS). This happens when there are several follicles that cause a fluid and electrolyte imbalance. There are different degrees of severity mild, moderate or severe OHSS. We will monitor you carefully to identify if you are at risk of this.

Can this affect my fertility?

There has been no evidence of this and highly unlikely especially as your welfare comes first. As part of the initial assessment the treatment aspects and implications will be reviewed.

Can I be cancelled once I have started the injections? Yes you can. This could be for one of two reasons.

If there is too good a response to the drugs and we do not want to risk your health. We would love that you tried again a little later on a lower dose of the same drugs.

OR

If the response is poor (where there less than three follicles developing) we would recommend cancelling the cycle. It is also likely that you will be discharged from the egg share programme.

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The egg sharing procedure

After you have been accepted on the programme then you will be taught how to take the series of daily injections required. If you have a problem self-administering these injections then arrangements can be made to either

• Teach a friend or spouse

• For you to attend somewhere

As the sharer there are two series of injections. The first series of injections are used to control the body’s natural cycle (also known as down regulation). The second series of injections stimulates the ovaries to develop more than the single follicle it would normally produced each month. The sharer is monitored by ultrasounds and blood tests.

Unfortunately we cannot guarantee how many follicles will develop or if eggs are in these follicles. Both donor and recipient will need to understand and sign the egg share agreement. The agreement explains that the aim is to develop at least 8 mature sized follicles. This is so that both the sharer and recipient will receive four eggs or more.

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If the sharer develops less than 8 follicles there are three options

1. to continue the cycle and give the first FOUR eggs collected to the recipient. Any other eggs collected the sharer keeps.

2. to DONATE ALL the eggs to the recipient and undergo a second cycle where all the eggs are kept by the sharer

3. to KEEP ALL the eggs collected and have no further attempts of

egg sharing

If the ultrasound shows 8 or more follicles (and the blood levels are satisfactory) the sharer will proceed to egg recovery. Note that

 If there is an uneven number collected then the extra egg will go to the sharer.

 If there are a larger number of eggs collected than anticipated another couple may be matched.

 If the ultrasound shows 8 or more follicles but, the number collected is less than the 8 the sharer gets the first FOUR eggs.

Can I have sexual intercourse?

Yes, but you have to consider the possibility of pregnancy and infections and so it is suggested that you consider using protection e.g. Condoms.

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Will I, (the donor) have any responsibility to any child born?

No, at the time of the donation (egg recovery) you relinquish all rights and claims over any egg, embryo or child/ children born as a result of the donation.

You are responsible to tell us of any genetic or inheritable disease present in your immediate family. If a child is affected with any condition that you have failed to tell us about, then legal action may be taken against you on behalf of the child. At times there will be conditions due to spontaneous mutations or difficulties at delivery in which the donor is not held responsible.

Can I change my mind?

Yes, you can withdraw your consent at any time BEFORE the eggs are collected.

How many times can I donate?

At present we have to limit the donations to no more than three families from your eggs. This controls the number of children born to one donor.

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What costs will I incur?

Once accepted onto the programmes there are some things that

you may need to budget for. The ➢ Contribution to egg sharing ➢ Additional surgery (e.g. cyst aspiration, hysteroscopy) ➢ Partner costs (semen testing and blood screen) ➢ If TESE/ MESA/ PESA is required or freezing following these procedures ➢ Donor sperm ➢ Assisted Hatching ➢ Freezing and initial storage of embryos ➢ Annual storage for embryos frozen ➢ Thawing and frozen cycle ➢ Backup or short term freezing of sperm

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How often will I need to attend?

Unfortunately, we cannot be exact on how many days you will attend. As a guideline below is a basic framework that we work by

Before you start the programme ➢ Meet Mrs Everett Keene for an initial discussion and submit paperwork discuss and /or make payment ➢ Meet one of the consultants and the IVF nurses ➢ Undergo psychiatric evaluati on, counselling, blood tests and any investigations required ➢ Meet the IVF nurses to learn more about treatment, drugs and injections. ➢ Make provisional dates for treatment ➢ Pay contribution to egg sharing

Commencing the treatment cycle 1. Start the first series of injections.

2. Attend for Ultrasound and blood test also known as baseline ultrasound this determines when you start the FSH injections. 3. An optional Ultrasound five days (D5) after the FSH injections has started.

4. Ultrasound seven days (D7) after the FSH injections has started

5. Ultrasound and blood test nine days (D9) after the FSH injections have started. By D9 we will have an idea of the possible date of egg recovery.

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6. There is a possibility that further ultrasounds may be required but you will be informed on day 9

7. Once the team is happy with the ultrasound and blood test a final injection will be scheduled.

8. Verbal and written instructions regarding the final injection, preparation and admission for the egg recovery will be given by the IVF nurses.

The egg recovery 9. On the morning of the egg recovery you will be admitted to the ward. Your spouse will also be required as he has to give a fresh semen sample. You will go home the same day at about 2:30pm we recommend that someone accompanies you.

10. The following morning we will call you we will enquire about your well being. We will also inform you about the eggs, sperm, and fertilisation. We discuss the number to transfer, freezing and if it is two or three days after the recovery that we will be transferring your embryos.

After the donation 11. Review of the donation and talk with Mrs Everett Keene.

12. Have a follow up appointment with one of the consultants.

13. Third HIV blood test about six months after the donation.

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Of course there will be continual dialogue with us and particularly with Mrs Everett Keene throughout the donation.

The first step to donating

If you are willing to be an egg donor then please complete and sign the donor registration form. The form must then be returned to

Mrs Denise Everett Keene

The Hugh Wynter Fertility Management Unit The University of the West Indies Mona

Kingston 7

Jamaica

Tel Direct line (+876) 970 2388 Fax line (+876) 977 2650

If there are any questions whilst you are completing the form then please contact Mrs Everett Keene. You may also write your issues or questions on the back page of the egg donor registration form.

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What to expect after you return the form

Mrs Everett Keene will look at your registration form to see that it is completed and there are no obvious reasons why you should not be able to donate. She will then call you shortly after she has received your form. At this point you have an informal chat and she will answer any questions that you may have. Mrs Everett Keene will arrange your first meeting.

The first meeting with Mrs Everett Keene is just to make sure that you understand the egg donation process and to co-ordinate all the things that you will need to do. Mrs Everett Keene will also require two forms of Identification that she will copy and keep in your file. If there are any problems relating to the donation she will try to help you find a solution. Once you and Mrs Everett Keene have decided that all is well then you will meet the rest of the team and undergo the initial screening that is required.

Mrs Everett Keene will try to co-ordinate your visits so that several things may be performed on the same day especially of you do not live in Kingston or on the island.

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Meeting the team You will then be ready for

• The psychiatric evaluation This is the completion of an extensive form at the unit. The second stage involves an appointment with the psychologist. This appointment will be set by the psychologist usually contacts you around two weeks after the forms are completed.

• Counselling as a couple This consists of two scheduled visits for counselling on a Wednesday afternoon at the unit with our counsellors. Both you and your spouse need to attend these sessions.

• The implications This is very important and necessary as we wish you to discuss the procedure you are about to go through. We hope that you will be able to discuss and share any concerns or thoughts about donating. We encourage the attendance of your spouse to these visits too.

• The medical consultation One of the consultants will outline the treatment and the procedures as well as your suitability to be an egg donor. We may perform a baseline ultrasound at this appointment too.

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• The screening tests (as described earlier)

Mrs Everett Keene may arrange for some of these tests to be performed closer to your home/ work if this is more convenient.

The Viral screens will be repeated close to the time of donation and should be no longer than three months of the donation.

Acceptance as an egg donor

After you have met the team and had your screening Mrs Everett Keene will contact you. Some of the tests may take a little while to return so this could be up to four weeks.

Mrs Everett Keene will inform you of the teams’ decision if you are to be accepted as an egg donor.

Once accepted then we will try to arrange dates of possible treatment with you.

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