SISTERS WHO BATTLED CONGENITAL HEART DISEASE

Two-year-old Amira and one year old Aliya are sisters who were both diagnosed with congenital heart disease at a tender age.

Amira is the second born and Aliya the third born in the family of four children.

Amira experienced recurring chest infections, palpitating heart beats and poor weight gain while months old. This was a clear sign that all was not well. Her parents took her to several hospitals in Garissa County, where they live and after several doctors’ appointments, she was finally referred to Nairobi for review by a cardiologist. During the review visit, Amira was diagnosed with Tetralogy of Fallot (TOF) and required corrective heart surgery.

Her parents learnt of CFACH through a past beneficiary and on visiting our office, Amira was registered with CFACH and added onto the waiting list. At the time they were reaching out to CFACH, negotiations with Jakaya Kikwete Cardiac Institute (JKIC) were underway and there were plans to send some of the children on waiting list to Tanzania for heart surgeries.

Amira was lucky to get a chance to be among the first CFACH beneficiaries to travel to Tanzania for surgery. She underwent successful heart surgery in December 2020.

At the time of Amira’s surgery, her mother was heavily expectant with her third born and little did she know that her unborn child had a heart disease.

Amira’s mum could not wait until her daughter was discharged from JKCI as she had to travel back to Kenya as her expected delivery date was drawing nearer.

A week after Amira’s admission, their family received their bundle of joy, a bouncing baby girl and named her Aliya.

As Amira and her father travelled back from Tanzania, they were excited and were looking forward to meeting the family’s newest member.

A month after returning home, Amira was due for her first post-op clinic and her parents took her to Kenyatta National Hospital. While there, the observing doctor noticed that the newborn had an irregular breathing pattern. He immediately did an ECHO test, and the results showed the child had Tetralogy of Fallot. This was extremely devastating news to the parents as they did not know how they would get treatment their daughter.

CFACH referred Aliya’s case to Chain of Hope and the case was accepted for surgery sponsorship. Aliya and her mother travelled to Aswan Heart Centre in Egypt in September 2021 where a successful open-heart surgery was conducted.

The two sisters are now doing well, and their recovery has been tremendous. They are both active children who can play with their peers.

Their parents who were very stressed when the children were diagnosed are now at peace and grateful to CFACH for helping their two daughters.

Mother’s Love that kept Hope Alive

Eight years old Amina Ibrahim is a charming young girl. She lives in Mombasa county and is the fifth born in her family.

She knew nothing else but pain in her early childhood. She presented symptoms of congenital Heart disease at the age of one month. An ECHO test was done by a Mombasa-based cardiologist and she was diagnosed with Tetralogy of Fallot(TOF).

She grew up as a weakly child who could hardly play with her peers or engage in any childhood games. Amina was simply her mother’s child.

At the age of 3 years, little Amina could depend on her mom for everything. Her body grew weaker and weaker as days passed by and most of her milestones were delayed. With less oxygen circulation in her body, she had a bluish coloring on her tongue, fingers, and toes.

Her mother’s love and care kept her going. She would always carry her little one on her back as she could hardly walk.

Worst moments were when her little girl would get breathless and pass out.

She watched it happen so many times and every time it would happen she would not freak out but watched her girl go into a deep sleep and hoped that she would wake up after 15 minutes or so.

Visits to various hospitals around Mombasa and in Nairobi bore no fruit. Every doctor who saw Amina said her case was urgent and could not be operated on locally. She was required to be flown out of the country for urgent heart surgery in an advanced heart center before the surgery window closed.

The most difficult year for her family was 2018, Amina could hardly eat and that meant that she grew weaker. There were several hospital admissions to try and keep her stable. She had recurring pneumonia, could not walk, and was bedridden.

At this particular time, her loving mum was heavily expectant and with the birth of her last born the same year her attention was now divided but was lucky to have elder siblings who could help.

Her mom could speak to her in local language and encourage her to be strong as she would one day get well, play, and go to school like other kids of her age.

Through a medical tourism company, the family got a quote from a hospital in India but could hardly raise the required amount.

In spite of the odds, her mum by faith applied for travel passports and visas to fly to India but time went by and luck didn’t knock at their door.

A light by the end of the tunnel shinned when a distant relative gave them the contact of CFACH executive director in 2019.

She followed up with the family to get the child registered in the program and through CFACH, the child got sponsored to get a repeat ECHO done since what was there was already outdated.

A new ECHO report, ECG and moving images were sent to Chain Of Hope (a UK based charity) and the case was on their waiting list for over six months.

All this time Amina was in so much pain and her mum kept calling CFACH contact person every day hoping to get some good news.

At some point, the hope of seeing her little get treated dwindled but through prayers, she kept believing and hoping above all odds.

In early 2020 Chain Of Hope approved Amina’s surgery sponsorship at their center in Aswan – Egypt.

As preparations were underway to have the young girl fly out, the global COVID 19 pandemic hit, and international travels were restricted. This was a bitter experience for the entire family since the child’s condition was getting worse.

After a long wait, the travel restrictions within Africa were decreased and in August of 2021, the young girl with her mother in the company of Dr.Agenta Odera flew to Aswan Heart Centre in Egypt where surgery was done.

She flew back home in October 2021 and to everyone’s shock. she had so much energy to walk up and down the stairs. Gave endless stories of her experience at the hospital. To CFACH family, this was the Amina we hoped to see one day. Her smile melts our hearts to date.

Shantel Jerop’s healing journey

Shantel Jerop hails from Eldoret – Uasin Gishu county. She is the second born in a family of two children. She is from a very humble background and lives in her maternal grandparents’ homestead with her mother and elder brother.

From the first interaction with Shantel, you can see that she is a vibrant child, who loves playing her with her peers though she gets easily fatigued.

Though shy upon first interaction, she is talkative and easy to get along with once she gets comfortable. She is fluent in her mother-tongue making it her default language of communication. Despite this you can still experience her very warm personality. 

Shantel was born as a term baby through caesarian section at Moi Referral & Teaching Hospital. She did not cry and was therefore put in newborn unit for a period of two weeks. An ECHO test was done before the child was discharged from nursery and it is then that she   was diagnosed with a congenital heart disease, Tetralogy Of Fallot (TOF).

Her mother was advised to visit Tenwek Hospital for Shantel to be reviewed by a cardiologist. Two years passed and Shantel’s mother was yet to take her for the recommended review due to financial constraints.

Shantel’s story is one of resilience and a long wait.

In 2019, a nurse from Eldoret Memorial Hospital linked the family with CFACH and after a telephone follow up the child was invited to Nairobi for registration and repeat ECHO in September of the same year.

At this time, she had been left under the care of her grandmother since her mum who is the family sole bread winner had got a casual job in Nakuru.

It was unfortunate that her grandmother lost her phone and went unreachable for several months.

In March 2020, her grandmother reconnected with us using a new number and we finally could proceed with the treatment plan that was pending.

We got her an appointment at Dr. Maina’s clinic in Kenyatta National Hospital.

A day prior to clinic date, Covid 19 was declared as a global pandemic causing there to be travel bans in and out of Nairobi.

The travel ban was in effect for several months and all we could do was to hold on to hope that Shantel would remain stable until we got a way to help her.

Four months later the travel ban was lifted and Shantel and her grandmother travelled to Nairobi. The grandmother was anxious as she found herself in the capital city, and she was too scared. Our social worker got to the bus stop on time and picked her up and headed to the family center.

At KNH, the child was reviewed by Dr. Maina who diagnosed the child with TOF, thereby confirming the diagnosis given at infancy.

The case was referred to our partner Chain of Hope and after a couple of months, their medical board approved her surgery sponsorship.

Chain Of Hope got her a surgery slot at Barcelona Children’s Hospital but as end of year drew closer, the hospital remained closed to foreign patients over the Christmas period.

Chain Of Hope requested for a slot at Aswan Heart Centre in Eqypt and the case was accepted.

Cherop is now looking forward to travel to Aswan Heart Centre in the company of her mother on 17^th November 2021.Her journey towards healing now begins on a beautiful note, all thanks to our partner Chain Of Hope

A LONG WAIT FOR HEART SURGERY

Muhdin is a seven years old boy and the last born in a family of four.

His family resides in Mombasa county although he is originally from Wajir – Northern Kenya.Muhdin’s mum, Ms. Rahma Abdi, is single mother who runs a small greengrocer shop for a living. Due to her minimal income, Ms. Rahma can only afford to live with her younger children and forcing her two elder children to live in Wajir with her mother

When Muhdin was 13 days old, Rahma noticed that he had fast breathing episodes. She became concerned and decided to visit Makadara General Hospital in Mombasa where he was diagnosed with pneumonia.

Following frequent visits to Makadara Hospital, Muhdin was referred to a cardiologist who after performing an Echo test, diagnosed him with a congenital Heart Defect; Ventricular Septal Defect (VSD). The renowned Mombasa based pediatric cardiologist, Dr. Bakari, recommended an open heart surgery for baby Muhdin. Rahma was devastated not only did she feel sorry for her son but she also did not know where to get funds required for the much needed heart surgery.

The cardiologist linked Rahma with Care For A Child’s Heart (CFACH) and advised her to submit the child’s medical profile to CFACH for consideration. After conducting a thorough background check to ascertain whether Muhdin met CFACH’s criteria, he was put in to our waiting list.

In 2019, CFACH forwarded Muhdin’s case to one of our partner organizations – Chain Of Hope, a UK based charity. The case was accepted for heart surgery sponsorship in late 2019 and Muhdin was scheduled to travel for surgery in Spain by June 2020.

2020 begun with a myriad of challenges owing to the COVID-19 pandemic. Muhdin’s travel had to be delayed. No one knew when the pandemic would be over and being in such uncertainty was extremely frustrating for Rahma. During this waiting period Muhdin had several pneumonia attacks and was in and out of the hospital causing further anxiety. Rahma held on to the hope that someday her son would get well. CFACH continued supporting Muhdin with drugs and sponsoring his hospital bills.

In March 2021, the COVID-19 curve in Kenya seemed to be dropping prompting Chain of Hope to secure a surgery slot for Muhdin in Sant Joan de De’u Barcelona Hospital in Spain.

CFACH was pleased to share this wonderful news with Rahma who had been waiting with bated breath for over a year.  Muhdin and his mother   travelled to Nairobi for visa application at the Spain Embassy. They were accompanied by the CFACH social worker who successfully assisted them in filling out the numerous forms. Muhdin and Rahma were all set to fly out on 15^th March 2021.

The Family Support Center was home to Muhdin and his mom for several days as they waited for the issuance of the visas. The CFACH team enjoyed having Muhdin around as he is such a charming boy.

As we escorted the mother and child to Jomo Kenyatta International Airport for their late night flight, Rahma could not hide her joy.

Being that both Rahma and Muhdin can only speak Swahili and this was their first flight we made certain that every travel detail was written in a file in case she needed to request help throughout the trip.

The hospital staff received them at the Barcelona Airport and headed straight to the quarantine facility where they stayed for 14 days. With good internet connections in the hotel and hospital, Rahma called the CFACH team to give progress updates on a daily basis via WhatsApp calls.

Rahma was also lucky that there was a staff member at the hospital from Kenya who helped with all interpretations thus making for smooth communications during the hospital stay.

Muhdin underwent a successful open-heart surgery on 7^th April 2021. On this a special day he got a new lease of life. He was in Spain for 60 days and returned to Kenya on 15^th May 2021. Muhdin continues to do well and is not on any medications.

Peninah’s Surgery in Tanzania

One-year-old Peninah Wanjiru is the only child in her family.

She was born at term through normal delivery. At one week of life, she developed Jaundice and was treated and discharged from hospital. The child grew well until she turned 6 months and started weaning She started having fast breathing patterns, was easily fatigued while breastfeeding and had a poor appetite.

For a period of three months, she had recurring pneumonia and was treated in a local hospital a couple of times.

The observing doctor referred the child to Kijabe hospital and an ECHO test was done on 10^th November 2021. The results showed that she had a large PDA.

A repeat ECHO test done at MPshah hospital on 15^th November 2021 showed the same results. She got a chance to have surgery done at MP Shah by a visiting team (Healing Little Hearts) but she got fever on surgery day and surgery had to be postponed.

Through CFACH & Heartgift support Peninah got sponsorship to travel to Tanzania and she underwent successful open-heart surgery on 13^th January 2022.

Peninah travelled. home safely on 28^th January 2022 and she is doing great.

Geoffrey: one boy, perthes disease, 3 heart defects, and acute stigmatization

Geoffrey and his twin brother, Wainaina, are 14 years old. They are the last born children in their family. They have two sisters and a brother. They live in Limuru, a cool and wet agricultural countryside in the highlands of Kenya.

Geoffrey always appeared physically weaker than his twin since birth and his development milestones also took a little longer. His parents were not worried about him, since there was no alarm raised by health care providers during postnatal visits. Additionally, the parents also thought it was normal to have one twin being weaker than the other.

Geoffrey (Right), with his twin brother Wainaina

Once enrolled in school, he was the laid back pupil, who would only play for few minutes before sitting back to watch the others play. His class teacher was concerned and summoned his parents to school severally. He had no discipline issues, didn’t complaint about feeling unwell and his learning was okay but he ‘refused’ to play. He did not play much at home either. This continued until his teacher and parents settled for the assumption that it was his temperament.

One evening after school, Geoffrey came home limping from a mild swelling and severe pain in his right hip joint. This was to be the beginning of his many hospital trips. At an orthopedic hospital, he was diagnosed with perthes disease-a rare childhood condition that occurs when blood supply to the thigh bone is suspended. He was due a corrective surgery when some pre surgery blood tests showed a likely problem with his heart. Further tests confirmed he had pulmonary atresia- the pulmonary valve did not form; therefore, no blood can flow from the right ventricle to the lungs. He also has Ventricular Septal Defect (VSD)- a hole between the two lower chambers of the heart and MAPCAS- arteries that develop to supply blood to the lungs when native pulmonary circulation is underdeveloped.

His parents were well aware that he needed heart surgery but they could not raise the surgery fees. His father runs a small grocery shop from inside their home compound. He suffers from arthritis that makes him immobile most of the time. This leaves his mother as the sole bread winner, relying on meagre earnings as a casual labourer and selling vegetables from their small garden.

Geoffrey’s condition brought about severe stigmatization from the community and that has to a great extent affected their social and emotional wellbeing. Adding salt to the injury, when Geoffrey completed his primary school education last year, he would not get circumcised- missing a culturally significant rite of passage and introducing further stigma for him among his peers.

Amidst so much financial and emotional strain, his mother managed to enroll him and his twin in high school at the beginning of 2020. Geoffrey enjoys singing in the school and church choirs. He loves cooking and dreams of becoming a chef.

7 years ago- today. Kelvin’s new lease of life

It is a fairly chilly morning when the Care For A Child’s Heart (CFACH) team arrive at Kelvin Irungu’s home in the transit town of Mlolongo, Machakos County. Kelvin Irungu and his two brothers; Reagan and Maxwell are cuddled together in one seat watching cartoons. It had rained the previous night and so their mother would not allow them to play in the mud outside.

Kelvin’s journey to the theatre for a heart surgery to correct Tetralogy of Fallot (TOF) began in 2010 when he was one-year-old. TOF is a combination of four related heart defects that occur together and need complex open heart surgery to correct. He had just begun to learn to walk when his mother noticed he got so tired after only a few strides. With his increased physical activity, also came shortness of breath.

The first impression was that little Kelvin suffered from pneumonia but this was ruled out when he did not respond to treatment. His parents sought alternative opinion and this led to a TOF diagnosis. His doctor advised that he urgently needed surgery.

At that time, Kelvin’s mother, Elizabeth, now a small scale trader was working as a casual laborer in a nearby factory. John, his father, is a metalsmith. With their combined income only able to cater for their daily living expenses, the cost of a heart surgery was beyond reach. Fortunately, Kelvin’s grandmother heard of CFACH that in turn presented Kelvin’s case to Heart Gift International who sponsored his surgery at the Dell Medical Centre in Austin, Texas.

‘It was a long journey, but I was willing to do anything for my son. It was my first time travelling out of the country, leave alone by air. Thankfully, we arrived in Austin to the warm reception of the Ross family- we are forever grateful to them! On 6^th November, 2013, Kelvin’s surgery took the longest eight hours of my life. He was in the ICU for 2 days and spent another 5 days in the wards. His doctors monitored him for a week post discharge from hospital before we could travel back home. From then on, he has never had any health challenges. He is leading a healthy, normal life.’ Kelvin’s mum.

Kelvin, now 11 years old, is in grade 5. He is an above average performer in class and enjoys playing football. His eyes are set for the cockpit when he is of age and his little brother, 4-year-old Maxwell tells us he will be Kelvin’s first passenger!

Kelvin (middle) with his brothers Reagan (left) and Maxwell (right)

Rising above Rheumatic Heart Disease: Patricia’s journey

The click clack of her high heels announces somebody is coming into the office. It is most likely our expected guest, Patricia Mwende, who is joining as an intern. She steps in with her smile ear to ear, almost instantly warming up an otherwise chilly morning.  We are glad to receive her; because the position she is filling needed someone but more specially because she has been through our program!

Patricia at her Desk in the CFACH office

Patricia was introduced to our program after years of agony with frequent fainting and vomiting.  She also had a never ending flu and headache and difficulty breathing. She was weak and dull and her stunted growth was obvious.

She was diagnosed with rheumatic heart disease at the age of 12 years and that began her journey in and out of hospital. Her situation was so dire, she sat the all-important Kenya Certificate of Primary School exam in hospital. Heart disease would not stop her from an impressive score that earned her a place at a good public high school.

In February 2010, she was excited to join high school. Her joy would not live long as conditions in the boarding school were not favorable for her health condition. This had her transferred from one school to another. Her high school years, scheduled to be four, ended up being six. It was in between these years that she also joined our program. She flew with her mum to Egypt for an open heart surgery.

The 25-year-old is the fifth born in a family of six. Her father is a bus driver and her mother is a farmer. Patricia had always dreamt of being a nurse but she missed her place at nursing school as her parents were not able to raise the needed fees. She enrolled for her second favorite, a Diploma in Health Records and Information Technology. She is currently working on her research paper Communication barriers faced by health care providers during service delivery to deaf patients. She is working on graduating this December! 

Patricia is an avid swimmer who enjoys giving back to the community. She is grateful that her she can now lead a normal life.  We are truly joyous that her life was saved. Her now healthy heart beats peacefully beneath the scar that tells of her journey with rheumatic heart disease.

Ryan: heart defect warrior aiming for the skies

Ryan receiving treatment in San Antonio, Dec 2015

For the first three years of his life, Ryan Mbuvi was strong and healthy. His growth and development milestones were normal. The only ailments he had on very few occasions of his young life were common cold and flu which were no cause for alarm. He showed no signs of an underlying critical illness.

When he started school at a local Montessori at the beginning of 2015, he was so excited to have long days of learning and play with his peers. As a first born, it was not his daily norm to have so many children around for play and school quickly became his new favorite place. Unfortunately, his excitement did not last so long. On the third week of school, Ryan’s mum received a call from his teacher. Ryan’s fever and pulse rate were both high.

He was rushed to hospital where days later, he was diagnosed with Ventricular Septal Defect (VSD). Hoping it was a misdiagnosis, his parents sought a second opinion which confirmed their worst fears. VSD is a defect in which there is a hole in the wall that separates the lower left and right chambers of the heart.

 “This diagnosis was the beginning of a draining and devastating journey in pursuit of Ryan’s treatment. The drugs were extremely expensive and could only be bought at a specific pharmacy. Ryan needed a heart surgery to correct the defect. At some point, the doctors gave up on him saying they lacked capacity to handle the surgery.” Ryan’s mum.

Ryan’s mum re connection with a long-time friend became the turning for this young family. It was this friend who introduced her to Care for A Child’s Heart (CFACH). CFACH, in partnership with Heart Gift International took up Ryan’s case and were able to fly him to San Antonio, USA, where he had a successful heart surgery in December 2015.

Ryan is now a 9-year-old grade 3 student, enjoying good health and no longer needs any post-surgery medicine. He still enjoys playing with his friends in school and his younger sister, Lindsey at home. Ryan looks forward to becoming a pilot and hopes to fly so frequently between Nairobi and San Antonio, in thanksgiving and community service for the life-saving surgery he had there!

Asha Adan: Discriminated for her heart defect

Asha Adan

When she was still a baby, Asha was diagnosed with cyanotic heart defect.  Her community believes this to be a curse and so she has to stay away from people. She cannot socialize with her age mates. She is surrounded by silence and loneliness, as her community deems fit. It is stigmatization so severe that at her age, Asha has never stepped into school. She cannot read or write, not even her name. Asha’s only friends are her siblings and elderly parents. Her mother is her confidant. Even when the rest of the world has stayed so far away from her, her mother has stood by her side.

Asha Adan, now 15 years old, was introduced to Care For A Child’s Heart (CFACH) by a teacher whose nephew the organization had assisted some years back.  Asha and her mother had to travel to CFACH’s family center in Nairobi. The good teacher mobilized a few friends and raised their fare.

At the CFACH family support center, Asha wanted to talk but she couldn’t because of language barrier. She only speaks Borana her native language in Mandera County, North Eastern Kenya. Her constant smiles and love for being near people tells of her friendly and jovial nature, but all of these she has to keep for herself. Although Asha’s condition is inoperable, she is not on any drugs but requires support to attend checkup clinics.