Congenital heart disease, be wary, misdiagnosis is very common

“There are many people going about their business, oblivious of a hole in their heart,” begins Jackline Mbugua.

She knows what she is talking about. For 16 years, Jackline laboured with an undiagnosed heart condition, doctors call it Atrial Septal Defect (ASD), which, in a nutshell, is a hole in the heart.

February is the heart month, so what better time than now to talk about congenital heart defects?

Jackline Mbugua, survivor and mother to a survivor of congenital heart disease (CHD)

Jackline spent most of her childhood on medication for asthma and pneumonia. She was 16 when she first heard the term, “heart murmur.” A doctor had picked it up during a routine checkup and promptly referred her to a specialist for an echocardiography (echo), a painless and comprehensive ultra sound of the heart.  She was diagnosed with rheumatoid heart disease, which, years and constant medication later, she was to learn was a misdiagnosis.

“After six years of injections and no significant change in my health, I stopped taking the medication.”

Save for the discomfort that comes with being short of breath, Jackline lived a semblance of a normal life. She even met the love of her life, got married and had a child.

“When our first born was about two years old, I got a terrible flu accompanied by difficulty in breathing.”

When she went to hospital, the doctor asked her whether she had a previous complication with her heart. Jackline gave her medical history, and this doctor immediately recommended an echo test, a term that is all too familiar with those who have been diagnosed with congenital heart defects.

“Many tests followed this one, and finally, I was informed that I had a hole in my heart.”

Though she and her husband were shocked by the diagnosis, it finally explained why Jackline had had a long-running breathing problem.

 “I had a closed heart operation, the first ever in the country at the time. The surgery was performed in March 2009, at the Nairobi Hospital by Dr Charles Kariuki,” she says.

The change after the operation was amazing.

LAZY BABY

“I could breathe without labouring and the heart palpitations I had learnt to live with drastically subsided. I am now completely healed. I only have annual checkups as a best practice for a congenital heart survivor.”

It was with the birth of their third born that Jackline and her family once again had to face a more complex version of congenital heart disease

Their son, Njamba, was just a few days old when Jackline realised that something was amiss. He would pull away from the breast every few seconds to catch his breath.

“I noticed too that he was a ‘lazy’ baby.” Njamba would sleep most of the time, as if he was exhausted, and was not as curious or playful as their first child had been.

Her motherly instincts kicked into high gear when Njamba developed jaundice. Though he was treated and discharged, he was still not able to breastfeed well and was therefore not putting on weight.

“I felt that something was wrong with him, even his colour did not look healthy, and so we decided to take him for a thorough check-up.”

The doctor who oversaw the check-up assured them that all was well.

“No doctor, my baby is not well!” Jackline insisted, which led to an unfruitful argument with the doctor. She ended up returning home as ignorant as they were when they went to hospital.

Her other two children had come down with a cold, so Jackline decided to take all three to a different hospital the next day.

“My boy is not sick, but he is not well,” She told the doctor, who patiently examined Njamba. 

“She checked the baby, re-checked him all over again and then she turned to me, but did not speak.”

“Is it a heart murmur?” Jackline asked the doctor.

“Yes. You need to see a cardiologist now.”

The doctor placed a call and soon after, Njamba was scheduled for an echo. He had what, in short, is referred to as TGA - transposition of the great arteries, a complex congenital heart defect. He needed urgent surgery, which could not be performed locally. To keep him alive, he needed a particular drug, which was not available in the country.

“From my previous experience, I have learned to seek second opinions. We did, but we got the same diagnosis.”

LIVING WITH CHD

The doctors made it clear that Njamba had to have the operation as a matter of urgency. They also arranged to have the medication he needed brought from India while they prepared for specialist surgery which would take place in the same country.

There was a big problem though. Their medical insurer informed them that they did not cover congenital complications. By then, Njamba was in ICU, time was running out, and yet the family did not have the money that would make the surgery possible.

Jackline says that it is a miracle they were able to raise money to travel and get treatment in India. Strangers stepped in to pray with them, while friends and family supported them financially.

Her son, through what Jackline calls divine favour, was able to get to India in time for the critical surgery, surgery that was a success. In the course of this interview, Njamba was a typical active toddler, running all over the place, bumping into people and getting impatient with his mother.

Says Jackline,

 “There is life after CHD. You can live a normal life after treatment. Most important, as a parent, don’t be hesitant or shy to voice your concerns about your child, even if it means disagreeing with the doctor.”

Baby Rawadha Abdullahi (6 months)

As told by Fatuma Siyat, Rawadha’s mother.

“I immediately noticed something about Rawadha when she was born. Her skin did not have the pink hue that her elder siblings had when they were born. She also was unable to breastfeed, and kept pulling away to catch her breath. The doctor explained that Rawadha had a soft pallet and recommended an echo after 10 days of birth. It is then that we learnt that she had congenital heart disease. It was painful for us, but my husband was very supportive and encouraged me. It really matters when a father is there for their child, and I am happy that my husband was there for us.

It took me two months to gather the courage to let our relatives know what was happening, although they could see that our baby was not well. Rawadha eventually had the life-saving surgery in India when she turned three months. I am grateful that NHIF covers even complex operations such as the one done on my daughter.

What I would like to emphasise on is that CHD is a treatable condition. I would tell any parent to take heart that a condition like that is not rahana, a punishment, and that God knows best.”

Ruth Wahu Ngwaro, in her twenties

Ruth is a beautiful, vibrant young woman with a quick sense of humour. You would not tell by just looking at her that she has been through three major heart surgeries already.

“I do not recall much of my earlier experience with CHD, though my story first appeared in a newspaper in the US when I was three years old and in ICU.”

Ruth was born with multiple holes in her heart.

Then, CHD was not understood as it is now, so Ruth’s is a story of heartache, despair and thankfully, victory in the end.

She remembers her second surgery, which took place when she was 12 years old. It had taken her family over a year to raise money for it, in which time she had learned to endure intense chest pain.

“I became a fund raiser, going to school after school, sharing my story and asking for financial assistance. At one point, my mother was so affected, she would cry the entire time as I talked to crowds of people, trying to convince them to offer me whatever money they had.” 

Ruth was only three when her father passed away, shortly after her first surgery.

“I am grateful to God, my mother and the many people that made it possible for me to undergo the three surgeries. The third one was done right here in Kenya in 2001. Since then, I have enjoyed good health. Currently, I have an artificial valve in my heart, which helps prevent a backward flow of the blood. I am on lifetime medication to, however, I have no restrictions and I live a normal happy life. I am even dating!”

Ruth has a degree in microbiology, though she is keen on advocacy.

“I want to create awareness about heart disease, starting with teachers in our schools. I constantly arrived in school late because I could not walk as fast as the other children due to laboured breathing. My younger sister, who would refuse to leave me behind, would be caned every day because she was late.

Teachers need to take time and understand that some children under their care might have a condition that prevents them from being like other children. They should therefore not be too quick to punish a child just because that child cannot keep up with the others.”

Ruth also wants to lobby for budget allocation for non-communicable diseases at county government hospitals.

Steve Mwangi, father to Leilani Nyambura, 9 months

“The first thing I remember noticing about Leilani after her birth was that she was ‘lazy’. She slept throughout and was not breastfeeding. The doctor assured us that all was well however. We sought a second opinion but were told that all was well. I liked to hold her against my chest as she slept and noticed that her heartbeat sounded strange, a sound that was not present when I listened to her brother’s chest. I knew then that something was not right, so we sought a third opinion. This time round, we met a young doctor who took her time with Leilani. She is the one that diagnosed a heart murmur and advised us to see a cardiologist.

My wife was distraught. I was distressed too, but I had to stay strong, though I did cry in the bathroom. We read everything we possibly could about heart murmur. I had resigned from my job earlier, and in the course of the diagnosis, which turned out to be Ventricular Septal Defect (VSD), we learned that our medical insurer does not cover congenital heart disease. It was a tough time for us, especially when we were told that surgery had to be done in India. Thankfully, we received a lot of support and were able to raise the money and travel to India.

After the operation, a lot has changed. Our daughter now breastfeeds well, she has gradually gained weight and is now active. We did the post operation echo test two months later and all is well.

What I would like to tell parents is to seek second, third, even tenth opinions if you notice that your baby is unwell. Secondly, I would tell parents to look out for their children. While growing up, I remember this girl who joined our school and we were told that she had a problem with her heart. We ostracised her instead of embracing her - she passed away when we were in Class Six. We should not stigmatise such children or make fun of their condition.”

Sarah Maingi, her 11 months old child has CHD

“My son, who is 11 months, was born big, at 4.9kgs. I am big too, so this did not bother me. Also, being a first time mother, I thought it is normal for babies not to latch well and to sweat a lot. When he was six weeks old, he developed a cold and was diagnosed with pneumonia and admitted in hospital. Further tests revealed a heart murmur, and after the echo test, coarctation of the aorta (COA) was diagnosed. This is a narrowing of the aorta, which affects the pumping and flow of blood.

This was devastating news for me. I am a single parent, and though I got amazing support from family and close friends, it was still tough to learn that my baby had to undergo an operation to fix his heart. Thankfully, the operation could be done locally, and after fundraising, he had the surgery. He is now a healthy baby. He has to do the echo check every six months and is on medication.

My advice to everyone reading this is to get a NHIF card and start contributing to the fund, other insurers might let you down, but NHIF will not.” 

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ABOUT CHD

While there are some factors known to increase the risk of congenital heart disease, no specific causes have been identified, though medics suspect genetics plays a role. Some of the factors that can lead to CHD include taking too much alcohol during pregnancy, diabetes, as well as contracting flu during the first trimester.

Dr Mark Awori, a children’s heart surgeon based at Kenyatta National Hospital (KNH) and Gertrude’s Children Hospital, says that out of the 12,000 children born every year in Kenya with the condition, only 300 will get the life-saving surgery locally, while a small percentage of the rest get treatment abroad. The rest are placed on treatment to manage the symptoms but do not live for long.

“There’s a high death rate of children with CHD, especially those who cannot access the right medical care,” Dr Awori says, and adds,

“The facilities are limited, there are less than 15 cardiologists in Kenya, and the cost of the operation is prohibitive for a majority of Kenyans.”

The cost of open heart surgery ranges between Sh850,000 to 1million while the cost of an echo in the private health facilities is around Sh15,000. The same test is available at Kenyatta National Hospital for Sh4,500, significantly lower, but there is a long waiting list, and a child in a critical condition cannot afford to wait in line.

“In general, there are two types of congenital heart disease. There is the complex or the complicated and the non-complex,” Dr Awori says, adding that two thirds of the non-complex conditions can be fixed locally.

To reduce the probability of your child developing CHD, pregnant women should have a nutritious diet, since malnutrition could further complicate cases of congenital heart defects.

“It is important to perform an echo immediately a heart condition is suspected. Early diagnosis saves lives,” the doctor asserts.

Misdiagnosis is common, as an echocardiography can only be performed by a specialist. Often, the babies are treated for pneumonia, asthma or even malaria, which might exhibit some similar symptoms such as fatigue. By the time they get to a cardiologist for an accurate diagnosis, it might be too late. 

Since some heart murmurs can be missed, Dr Awori advises parents to speak out if they notice any of the following symptoms in their babies:

• A dark blue tongue. A normal tongue is pink.

• A baby who is not feeding well.

• A baby who gets tired during a feed.

• A baby that sweats a lot.

• A baby who is not putting on weight appropriately.

• Irregular heart beat or noise from the heart.

The parents we have interviewed have formed a peer support group, which is growing by the day. They offer one another moral support and spread awareness about congenital heart disease.

If interested in finding out more, email: [email protected]