Living on oxygen-Five years after NICU

What do you do as a parent when you are told that  your daughter who left the NICU five years ago may spend the rest of her life living on oxygen?

Last year, my daughter, who had just turned six weeks, had a severe viral infection which saw us staying at the pediatric emergency for four days and the baby’s ward for six days. In seven out of our 10-day stay at the hospital, she was put on oxygen and it was difficult watching her literally fight for her life each day.

I remember the struggle we went through to change her clothes, clean her and monitor her throughout the day and night just to ensure that the nasal cannula (tube in her nose) did not shift.

I have tried writing this blog for a while now but it’s been difficult as I know how heart-wrenching it is for a parent to look on helplessly when your child’s life depends on oxygen.

More tear-jerking is the fact that these parents, based in Koforidua in the Eastern Region of Ghana, do not know if their child will ever breathe without support, play around like any five-year-old girl or grow up to live her dreams.

Elita Afia Boafo Asare Junior was admitted to the Neonatal Intensive Care Unit (NICU) and managed as a case of moderate preterm (born at 33 weeks) in Respiratory Distress Syndrome(RDS) five years ago. The second set of twin girls, she was discharged with her twin Elisa, after spending several weeks at the NICU.

Symptoms

Her mother, Mary Danquah Asare said her two girls had been well after they left the NICU and it was few months after they turned four that Elita’s symptoms started.

Some of the symptoms included persistent cough, difficulty in breathing, fever and weight loss.

“ At the initial stages, doctors could not tell what exactly was wrong with her. Initially, they said pneumonia, later asthma and even tuberculosis. We did several lab tests and x-rays but each time there was a different diagnosis .It was after a chest scan that doctors informed us what her condition was.

The then four-year-old girl was diagnosed with Bronchopulmonary Dysplasia (BPD), a chronic lung disease, which makes it difficult for her to breathe.

Bronchopulmonary dysplasia (BPD) is a chronic lung disease of primarily premature infants that results from an imbalance between lung injury and repair in the developing lung.The BPD is the most common respiratory morbidity in preterm infants.

The specialist in charge of her case confirmed that Elita’s poor lung capacity and less space made it difficult for her to breathe well.

Living on oxygen

There is no treatment to cure her condition except to focus on treatment meant to support breathing which is oxygen. She may live on oxygen for the rest of her life or may recover.

Currently, the hospital has given her two oxygen cylinders with arrangements made to refill them each day.

“She had to stop schooling because of her condition, she can’t move freely, I always have to be around her to ensure that the tubes are well connected. We use a cylinder each day so we make sure to refill the other so we don’t run out,” her mother said.

To fill a cylinder, they pay GH₵46 and it costs about GH₵25 to transport it to and from the hospital totaling GH₵71 each day.

Living on hope

Mrs Asare said they are now living on hope as they have been told that it will only take God’s intervention for her daughter to be able to breathe without support.

Because of her condition, her mother, a hairdresser had to quit her business to be by her always and they currently live on the earnings of her father, a photographer and most of his earnings is used to buy oxygen on a daily basis.

“Its sad to see her suffer this way and knowing that there is nothing I can do to help her. Sometimes, she likes to play with her siblings but the little activity leaves her exhausted and panting for breath.

“I was really shaken by how quick her condition deteriorated. She lost weight drastically, couldn’t eat and even the colour of her hair changed. Between her and my other twin, she was the more active one. When she was a baby, she was chubby and always playful but now her movement is restrained. Currently, she has also been placed on a diet to improve on her weight. She eats very little and even that, it takes a long while for her to finish the meals.”

Appeal

Mr and Mrs Asare, parents of Elita, are appealing on the general public to support them raise funds to buy an oxygen concentrator which cost about GH₵10,000 to reduce the cost of oxygen.

“ All our savings have gone into finding solutions to her condition and we are always cash trapped because of the oxygen we buy on a daily basis. Some benevolent people have made some donations but it has all gone into paying for her oxygen. I am optimistic  that if we have the oxygen concentrator, we will be able to cut down the cost”.

Editor’s note:  Unfortunately, Elita passed in January 2022 after her condition deteriorated. Thank you to everyone of you who donated towards her treatment.