When babies are born with organs outside the body

When 34-year-old Anne Opondo from Bondo discovered she was pregnant in 2019, her heart overflowed with the joy every expectant mother knows.

But what began as a journey of hope quickly spiralled into months of fear, uncertainty, and heartache. Her pregnancy was riddled with complications, painful scans, and difficult medical conversations that tested her strength as a mother.

“It’s every woman’s joy to learn she’s pregnant,” Anne begins. “But right from the start, my pregnancy was complicated. I was constantly at the clinic, and during one ultrasound, the doctors said they sometimes couldn’t see the baby’s legs, or even a head. They suggested abortion as the only way forward. I was horrified. How could I end a life that had already begun inside me?”

Anne says the suggestion came from several hospitals. Each time, she refused.

“They kept telling me to terminate the pregnancy, but I wasn’t ready for that conversation. I almost lost my mind hearing those words repeatedly. I knew it would be hard, but I chose to carry my baby to term,” she recalls.

At six months, Anne went into early labor. She was rushed to Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) in Kisumu, where doctors performed a Caesarean Section, her second after a complicated previous birth.

“That frightened me so much. I wondered why all my deliveries were abnormal,” she admits.

Her third-born, baby Sheila Bahati, was delivered prematurely and immediately placed in the nursery.

Moments later, doctors informed Anne that her newborn had been born with omphalocele, a rare condition in which a baby’s abdominal organs, including the intestines and liver, develop outside the belly through the umbilical cord.

“I didn’t even understand what the condition meant,” Anne says softly. “When I looked at my baby, her tiny stomach bulged with her organs visible inside a sack. It broke me. I asked what caused it, but I didn’t fully get the explanation. I just knew I had to fight for her.”

Stigma, struggles, and unwavering love

Anne’s heartbreak continued beyond the hospital. “My family didn’t take it positively,” she says. “Some thought I had done something wrong during pregnancy; others blamed me for refusing abortion. But I couldn’t give up on my child.”

From 2020 to date, Anne has lived a life centered around hospital corridors, clinic visits, and endless reviews.

“Sometimes her blood count drops, sometimes her weight goes down, and she struggles to breathe,” she says. “She’s been surviving on medical attention since birth.”

As Sheila grew, her condition became more visible and with it came ridicule. “Other children mocked her because of her swollen stomach. She would ask me why her tummy was different. I had no words to explain except to tell her she’s special,” Anne recounts.

The financial burden was crushing and more wanting. Anne, who is jobless, relied on family support and occasional well-wishers. “People often ask why I didn’t terminate the pregnancy, but I tell them I wanted my child. I love her. Despite everything, she deserves to live.”

Then came a ray of hope. Anne learned that JOOTRH would be holding a paediatric surgical camp, with specialized surgeons volunteering to treat children with conditions like her daughter’s.

“The doctor told me my child would be among the beneficiaries because I was under the Social Health Authority (SHA),” she recalls with a smile. “Last week, Sheila underwent a procedure called component separation repair. Seeing her wake up every morning now fills me with gratitude. I can finally smile.”

Before the surgery, Sheila’s life was a daily battle difficulty breathing, constant weight loss, and fatigue.

“But now, after the operation, I can already see improvement,” Anne says. “She’s recovering, and I believe one day she’ll live a normal life.”

A father’s battle for his daughter

Anne is not alone in her journey. Kevin Odhiambo, 45, from Kisumu County, shares a similar story.

“When my wife was pregnant with our second child, she experienced continuous bleeding,” Kevin recounts. “We visited several hospitals, and some doctors said her uterus might have a problem. Others suggested abortion. But we couldn’t accept that. We believed our child deserved a chance.”

The bleeding persisted, and though medication was given to control it, nothing changed. “When she finally gave birth, our happiness quickly turned to fear. The baby’s intestines were outside her stomach,” Kevin says quietly. “She was taken to the emergency room and then to the incubator.”

It was 2013 the year Kevin first heard the word omphalocele. “I didn’t even know what it meant,” he admits. “All I knew was that my child’s life was in danger. Since then, I’ve been taking her to hospital for reviews, but for years, there was no real improvement.”

Life took a financial toll on us. “I sell second-hand clothes at Kibuye Market, and it’s barely enough to feed my family,” Kevin says.

“The condition drained us completely. But when I heard about the surgical camp, I knew this was the breakthrough we had been waiting for. My daughter underwent surgery, and she’s now recovering.”

Beyond the medical struggles, Kevin and his family also faced stigma. “My child was mocked by other children because of her big stomach,” he says.

“She became withdrawn, avoided playing with others, and it broke my heart. This experience has taught me that parents of sick children must never give up. No matter the condition, our children deserve love, dignity, and care.”

Surgical camp brings new hope

Last week, JOOTRH hosted its annual paediatric surgical camp, where over 124 life-changing surgeries were performed within three days. The initiative brought together 26 paediatric surgeons, anaesthetists, and nurses all volunteering their expertise to treat children aged zero to 12 years, suffering from congenital or acquired surgical conditions.

Beneficiaries came from across the Lake Region Economic Bloc, including Kisumu, Siaya, Homa Bay, Migori, Kisii, Nyamira, Kakamega, Bungoma, Vihiga, and Busia counties.

All surgeries were fully covered by the Social Health Authority (SHA), lifting the heavy financial burden from parents.

The camp aimed to bridge the growing gap in specialised paediatric surgical services in Kenya’s western region, offering not just treatment, but renewed hope for hundreds of families.

According to the Centres for Disease Control and Prevention (CDC), omphalocele (also known as exomphalos) is a defect of the abdominal wall where an infant’s intestines, liver, or other organs protrude outside the belly button inside a thin membrane. It occurs when the intestines fail to return into the abdomen during early pregnancy. The condition affects about one in every 3,000 to 5,000 births worldwide, and if untreated, can be fatal.

According to Dr Faith Bob, a consultant paediatric surgeon and the vice chairperson of the Kenya Association of Paediatric Surgeons (KAPS) explains that paediatric surgical services in Kenya remain scarce and often overlooked.

“In this entire western region, we have only three paediatric surgeons two in Kisumu and one in Kakamega serving over 14 counties. Yet, the number of children needing surgery is overwhelming, “she says.

Because of the shortage, many children end up being handled by general surgeons or adult urologists who are not trained for paediatric procedures. “This misdirection can cause complications,” she notes.

“That’s why as an association, we decided to organise annual surgical camps to ease the burden. This is our fifth consecutive year, and every specialist here is a volunteer,” she adds.

Dr Bob has handled numerous cases of omphalocele during the camp. “It’s what we call an anterior abdominal wall defect,” she explains.

“A baby is born with intestines, part of the liver, and sometimes other organs outside the body, covered in a thin membrane.”

She distinguishes omphalocele from gastroschisis, another abdominal wall defect. “In gastroschisis, the organs are outside the body but not covered by any membrane meaning they’re directly exposed. Both conditions require urgent surgical intervention.”

Omphalocele can be detected before birth through ultrasound or discovered immediately after delivery. The cause, Dr Bob explains, is often genetic mutation or chromosomal defects, sometimes linked to maternal factors such as diabetes or advanced maternal age. “We’ve even seen it occur in families, suggesting a genetic pattern,” she adds.

Management depends on the size of the defect. “Some cases can be closed immediately after birth, while others require delayed closure once the baby stabilises,” she says.

“For larger defects, we perform a component separation technique a complex reconstructive procedure where we literally create an abdominal wall by stretching and uniting the muscles.”

Permanent curative surgery

The good news, she says, is that the surgery is permanent and curative. “Once the defect is repaired, the child can live a completely normal life,” Dr Bob assures.

However, challenges remain immense. “Paediatric surgical services are among the most neglected in Kenya,” she observes.

“We cannot win the fight against under-five mortality if we ignore surgical needs. About a third of under-five deaths are related to untreated surgical conditions.”

Lack of awareness, she adds, is another problem. “We’ve seen parents keeping a child at home for years because they think a swelling is normal. Some bring children with hernias, hydroceles, or undescended testes when it’s too late sometimes after 10 years.”

Equipment scarcity compounds the issue. “Most facilities use adult surgical tools on children,” Dr Bob laments.

“Paediatric surgeries require specialised instruments, smaller catheters, and delicate consumables which are often unavailable.”

She recalls a case that touched her deeply: “A boy from Migori was brought here in critical condition after living with a treatable surgical defect for too long. By the time he arrived, his situation was life-threatening. We had to rush him to ICU before operating. He’s now recovering, but that case reminded us how lack of early referral kills.”

Dr Bob’s message to parents and guardians. “If you notice anything unusual with your child, a swelling, delayed growth, breathing difficulties, or abnormal development please seek care at a higher-level facility. Don’t wait or rely solely on dispensaries. Early diagnosis saves lives.”

Dr Bob says the beauty of paediatric surgery lies in its curative nature. “Most surgeries we perform are permanent solutions. Once we operate, the condition doesn’t recur,” she explains.

“After surgery, we encourage parents to let their children resume normal play and social interaction as soon as possible.”

Nutrition also plays a crucial role in recovery. “We emphasize balanced diets, especially high-protein and iron-rich foods,” she says.

“In Nyanza, many children suffer from anemia due to malaria or sickle cell disease, so we also recommend hematinics to boost blood levels.”

For Anne Opondo and Kevin Odhiambo, the JOOTRH camp was not just a medical intervention it was a miracle. “I smile every morning when I see Sheila wake up,” Anne says, her face brightening.

“After all the pain, I finally believe brighter days are coming.”