A mother’s joy: My son survived open heart surgery
As Alexie Chebet, 41, settles down for this interview, her eyes rest lovingly on her son, Luke Kerich.
His wide eager eyes light up as he makes a beeline for his mum, who embraces him warmly. Luke is four. He was born with a heart defect and recently underwent a successful surgery to fix a hole in his heart. Chebet refers to him as her little warrior.
“Unless you have been where I am, you can never truly understand what it feels like to have a child that underwent a delicate nine-hour operation give you a smile,” Chebe comments, and continues, “Anybody who saw Luke buried in breathing and feeding tubes in hospital sees him today and sees a miracle. I remember holding him in my arms before the operation and listening to his heartbeat moments before he underwent surgery.
His heartbeat still rings in my mind, it gave me hope he would make it,” she says.
The doctors that performed the surgery were forthright with her, and made it clear that the surgery could go either way and that his survival hung in the balance. Signing a document saying that she understood this was the most difficult thing she has ever had to do.
“That was the scariest moment in my life. Just thinking of it again gives me shivers,” says the mother of two. Luke is her youngest.
But he made it through, having spent 17 days in the hospital following the successful surgery, which was performed at Tenwek Hospital in Bomet County. The surgery was performed by visiting cardiologists from Boston in the US and Kenyan cardiologists led by Dr Agneta Odera on March 27.
His mother says that he’s happier and more energetic following the surgery. Nowadays, when he plays, he does not pant or run out of breath like he used to.
“I had watched the news, movies and documentaries of mothers whose babies had heart problems, but I never imagined that one day I would be in such a situation,” comments Chebet.
Hole in the heart
Luke was diagnosed with a hole in the heart one month after his birth in March 2019. He was constantly tired, had shortness of breath and sometimes his hands, tongue and lips would turn blue. When she took him to the hospital, she was told the hole was small and that it would close on its own. Later on, however, the doctors discovered he had another complication - one of the valves was narrow, and she was told to take him back to the hospital after six months.
When Luke turned a year old, his mother took him back to the hospital and was informed that the valve had rectified itself, only for the doctors to discover another complication – his heart had tissues that were not supposed to be there.
“We were advised to return to hospital after six months, by then, his pulse rate was higher than normal and he had started sweating at night. In January this year, doctors at Tenwek Hospital discovered another bigger hole in his heart,” explains Chebet.
It is then that the decision to perform surgery to seal the two holes, in the process saving his lungs from collapsing, was done.
“I slipped into depression when I learnt how sick Luke was. I couldn’t eat or talk. I used to lock myself in my bedroom with my baby. I was so stressed, my breast milk dried out. I cried. I was scared my baby would die at any moment. I asked God many questions.”
She is thankful for the support and encouragement she received from her family, including Luke’s grandmother, Sarah Tanui, who kept reminding her to have faith.
“Sometimes I had no money to buy his special diet, which was purely organic. Every week I spent Sh4, 000 on his food, which included wheat porridge, oat, rice and goat milk, which was highly recommended by doctors because of its high nutritional value, necessary to support his fragile heart.”
Though Chebet is now at peace, her life has changed dramatically, especially her social life, since Luke almost needs round-the-clock care.
“I no longer hang out with friends. I spend more quality time with my son, which wasn’t the case in the past. I put his interests first now,” says Chebet.
Weak immunity
At the moment, no visitors are allowed because Luke’s immunity is still weak, the family also has to be careful that he doesn’t fall, in case he hurts his chest. For instance, he cannot run around so much since he might fall and injure his chest, neither is he allowed to play with other children to avoid contact and infection such as flu from other children because his immunity is still weak.
His diet includes lots of fruits, vegetables such as spinach, managu, terere and proteins such as meat, eggs and fish.
Luke is yet to go to school. Doctor’s advised that he stay home during the recuperation period to avoid falling down or getting hit while playing. He goes through homeschooling, and a teacher visits on weekdays to teach him.
The lifesaving surgery has come at a cost for Luke, but it is a cost that will eventually pay off.
“The doctors told us that as he grows up, he will heal, and will not need special care in future, in fact, after one year, he will be able to play and do all the things that other children do,” explains Chebet.
Currently, he is on medication, which he takes every morning and evening.
“His sister, who is 10 years, complains that I pay more attention to Luke, but I explain to her that the special love for Luke is part of his healing process,” Chebet comments about the delicate parenting balancing act.
“I want to tell mothers facing a similar problem that there is hope in every challenge they face with their children. Take care of your children despite the difficulties. Don’t lose hope when you’re told your child has a life-threatening condition.”
Chebet has since learnt to pay attention to small details concerning her son that she would take for granted.
“When Luke cries, I am quick to find out what the problem could be. I also pay extra attention to his breathing patterns. Every morning and evening before he sleeps I listen to his heartbeat to make sure he is recovering well. When he plays I also pay keen attention, and when he talks to me I listen keenly because it is necessary.”
Chebet is full of praise for the team of doctors that attended to her son during and after the surgery.
“Dr Agneta Odera is not only an incredibly gifted, brilliant cardiologist, she truly cares about her patients. I have never seen doctors committed beyond their call of duty like the team of doctors and nurses from Boston and Tenwek Hospital,” she comments.
The total bill came to Sh800, 000, with the National Hospital Insurance Fund (NHIF) paying Sh450,000.
“I can’t imagine how I would have managed to pay this bill without NHIF,” says Chebet, adding that before settling for Tenwek Hospital, she had been referred to a hospital that was asking for Sh2 million, and another Sh1 million.