One woman’s triumph over a rare fertility disorder

After an afternoon nap, Hezekiah jumps onto his mother’s lap and pushes her breasts, making some funny noise as if he is riding. Abraham intervenes and next thing, they are fighting over mum’s body—Abraham pulling Hezekiah down. Their father comes and takes away Abraham to end the chaos.

Hezekiah ensures my eyes don’t meet his. “That’s him with strangers,” their mother says. “But he’s the crazier one. Even during pregnancy, I always wanted to meet this guy whose elbows always pushed my organs. But Abraham was always peaceful.”

Next thing, Hezekiah is on an amoped. Abraham gets his and joins. They ride away, as their mother smiles, with love.

Yet this smile is born out of a struggle. Abraham Hakiza and Hezekiah Kwibutsa are fraternal twins. Their mother calls them rainbow babies, a name given to a healthy baby born after the family lost a baby due to miscarriage, infant loss, stillbirth, or neonatal death.

While her classmates had their menstrual periods as early as Senior One, Phiona Nanozi started hers in Senior Three. And she would have about three periods a year. But she was unbothered, because missing periods was surviving the associated inconveniences.

The irregularities persisted through university but she did not tell even her parents. She never knew the skipped periods would haunt her years later.

Before Nanozi began dating, she needed to learn more about her condition. Doctors told her she was suffering from Polycystic Ovarian Syndrome (PCOS), a hormonal disorder among women of reproductive age. According to Mayo Clinic, PCOS is commonly associated with infrequent or prolonged menstrual periods and makes ovaries develop numerous small collections of fluid and fail to regularly release eggs.

The exact cause of PCOS is unknown. But studies show it is a genetically-determined primary ovarian disorder resulting in excessive secretion of androgens—or male hormones— in a girl, which starts in fetal life. Usually, the effects of this exposure manifest during or before puberty.

A doctor prescribed birth control pills, which helped to regularise Nanozi’s hormones. But she stopped taking the pills in about a month, fearing her parent’s reaction and the side effects. Six months later, her menstrual anomalies returned.

When Nanozi and Derek Ngoga began dating about eight years ago, they weren’t in a rush to have children. So, they did not rush to address her problem.

Along the way, Nanozi conceived. But after a few weeks, she suffered a miscarriage. Now the warning bells rang too hard to ignore.

Soon, the two were going be husband and wife and the search for children became real.

One doctor assessed that Nanozi produced many eggs in one cycle which affected her chances of conceiving.

He prescribed medication which normalised the situation and she conceived, again.

But the couple’s joy and expectations did not last long as subsequent tests revealed she had experienced a blighted ovum—the fertilised egg implanted in the uterus did not develop into an embryo. She underwent an operation to remove the amniotic sac.

Then a friend referred the couple to Women’s Hospital International and Fertility Centre in Bukoto-Kisaasi.

Assessment revealed that previous interventions had scarred and blocked her fallopian tubes. Now that was double jeopardy. Fixing one problem would be futile.

To unblock the tubes, she underwent a laparoscopy—a surgical diagnostic procedure performed using small cuts on the abdomen or pelvis and a camera to examine the organs inside.

They tried to conceive naturally. But again, the hormonal abnormalities stood in her way.

Dr Joseph Kafuuma, who handled Nanozi’s case, says if the patient is below 35 years, “our primary goal is restoring natural fertility.” But it can take a woman six months or a year to conceive. Yet with PCOS, the wait could even be seven years.

The Ngoga’s couldn’t wait longer or repeat the operation that had cost them Shs5m.

They decided to go for the In vitro fertilisation (IVF)—a process of fertilisation where an egg is combined with sperm outside the body.

It was the ideal solution as it avoids the role of the tubes and neutralises the effects of PCOS, which causes production of multiple eggs but does not allow any to mature to the stage of ovulation.

Early 2018, she began the hormonal therapy to prepare her body to conceive and sustain a pregnancy.

“But it’s a process Nanozi wouldn’t wish to undergo again, she says, remembering the daily injections on the abdomen, she had for nearly two months. “It stresses you emotionally and financially.”

The treatment sparked another complication: ovarian hyperstimulation syndrome, an exaggerated response to excess hormone, which made her ovaries swollen and painful. The therapy was stopped. And about 22 eggs were collected from Nanozi in one cycle.

After fertilisation with her husband’s sperms, three embryos were inserted into the womb. Two weeks later, the pregnancy test was positive.

Once again, the couple got a glimmer of joy and hope. Because the conception rate via IVF is not 100 percent successful. The embryos can fail to implant. And Nanozi knows women who have tried for as many as nine times, in vain.

Actually, Dr Kafuuma says, globally, conception rate varies between 35 to 50 percent. While at Women’s Hospital, it ranges between 45 and 70 percent.

For Nanozi one embryo died and two survived, much to her satisfaction. She also survived the burden of carrying quadruplets had one embryo split into twins.

“Of course you’re desperate and thinking ‘it’s better than nothing…but it’s not easy.” Even then, she had a terrible pregnancy. Any pregnant woman suffers morning sickness in the first trimester. “But mine was terrible,” she recalls.

Then in her fourth month, a checkup indicated that her cervix was opening, risking a third miscarriage. A cervical stitch was placed to hold her weak cervix closed.

At five months, even the uterus could not hold the fetuses from descending. She spent the next four months on bed rest, lying. She could hardly sit or stand for 30 consecutive minutes.

But fear to lose a job as a procurement manager at Bakhresa Grain Milling forced her to keep working throughout the pregnancy.

 Nanozi suffered back pain and her upper back still has a slight kink, as a result.

At six months, she took a jab of a steroid to help the babies’ lungs to develop to enable them survive in case they were born preterm. 

At 34 weeks, Nanozi developed breathing difficulties. And at exactly 36 weeks, she delivered two baby boys through C-section on November 30, 2018. Did she smile? Perhaps a wry smile, under crests of pain. Her feet were still twice their normal size. Her breathing became more difficult.

Back to Women’s Hospital, her doctor referred her to Wellington Diabetes and Heart Clinic on Bombo Road. But the medication that was prescribed did not allow Nanozi to breastfeed because the babies could ingest the drugs. Even her chest had to be as light as possible. She would only return home after 10 days.

Later, the doctor would tell her that when she was admitted her heart was functioning at just 15 per cent.  She would visit Wellington once a week, then twice a month, as recovery progressed, paying Shs600,000 per visit. She said the IVF had cost them Shs25m.

Husband’s role

Stories of men abandoning their wives struggling with infertility are not new in Uganda. But Nanozi can’t thank her husband enough. “Saying he was there for me is an understatement,” she says with an affectionate smile.

During the pregnancy, the couple left their home in Nakasajja, on Gayaza Road to rent a fully-furnished apartment in Kyambogo, closer to Nanozi’s workplace and the hospital.

“Derek was always my pillar, morally and financially,” she says.  He woke up every night to make the milk and feed the babies.

Dr Kafuuma says such support from men is important but cautions against selling property, or securing loans, because IVF treatment is not a sure deal. Nanozi hails her sister, Martha, who shared a bed with the babies for the first three months.

Abraham and Hezekiah are healthy and their mother says they hit their milestones faster. Last November, they made two years. But are the Ngoga’s ready for more babies?

“The desire to have more kids won’t go away… But my husband fears anything that would spark my heart problems…but I am positive. Maybe God is planning for us a natural and peaceful pregnancy.”

Ready to help

A study published in The Pan African Medical Journal, January 2021, shows that PCOS is the commonest cause of anovulatory infertility in Uganda, affecting 5-13 percent of women of reproductive age.  Anovulation—a woman’s failure to release an egg—often due to hormonal imbalance—affects up to 76 percent of women with PCOS.

The study observes that the Ugandan government has recognised infertility as a major problem affecting over five million people, but has not included PCOS in the Ugandan Clinical Guidelines, “hence it’s not part of the Uganda minimum healthcare package.”

This, the study asserts, delays diagnosis yet early detection is ideal for awareness of associated risks: infertility, dysfunctional uterine bleeding, endometrial cancer, obesity, diabetes, hypertension, type 2 diabetes and heart disease.

Due to its complexity, PCOS can last in women’s life from puberty to post-menopause.

Though the true prevalence of PCOS in Uganda is unknown, the study concludes, anecdotal data shows that it is quite prevalent among infertile women in the country.

However, limited access to laboratory facilities and standard ultrasound scanning modalities, the research partly says, limits awareness, especially among low-resource settings.

Speak up

Doctors the world over are learning more about PCOS, as women try several treatments.  And Nanozi wants to use her story to try to bridge that awareness gap between the rich and the poor.

“We need to fight the ignorance and stigma related to infertility,” says Nanozi, who recently founded Rainbow Hearts Foundation, an initiative seeking to sensitise Ugandans on the dynamics of infertility and the necessary interventions. “Some are expensive; some are cheap. People, especially women, should stop dying in silence,” she told us in her first media interview.

“If we speak, people shall appreciate that men too can have fertility issues and start looking for solutions instead of heaping the blame on women.

Hence, helping infertility victims to access mental health therapy is a core part of her foundation, due to be launched soon in Masaka. Nanozi named the foundation ‘rainbow’ because like the colours of the rainbow, she of the rainbow, her babies stirred mixed emotions: anxiety, guilt, fear; and joy, reflection and healing. “And in the Bible, the rainbow symbolises hope and healing—typical of my story.”

PCOS symptoms

Woman caught in the fray

Did you know that fertility medication is not included in insurance in Uganda?  Other ailments and conditions not included in insurance are:

Irregular periods

Ovaries that are large or have many cysts

Excess body hair, including the chest, stomach, and back

Weight gain

Acne or oily skin

Male-pattern baldness or thinning hair

Infertility

Small pieces of excess skin on the neck or armpits *Dark or thick skin patches on the back of the neck, in the armpits, and under the breasts