The Death of Dalmus: A True Story.
The guest house’s name was planned to be “Dalmus” as the story behind this little boy with Spina Bifida was the start of this wonderful initiative.
Mary –Mama Dalmus- was visiting her aunt when the amniotic fluid broke. She delivered and when her aunt saw the swelling on the back of the new-born baby she transferred both of them to the dispensary in Ol-moran. There they were referred to a Catholic hospital. The sisters knew about St-Martins, a Community Based Rehabilitation (CBR) project in the region. Timothy, the physiotherapist of St. Martins, took her home and as it was already late he hosted the young mother and child in his house. Next day Mary and Dalmus travelled to Kijabe where they arrived in the evening.
On Dalmus’ third day of life Bethany Kids, Kijabe closed his back surgically. What a success, (early intervention in action) with normal transport Mary would have had at least 3 days of travelling with those small local buses. The network of caretakers, hospitals and CBR projects Bethany Kids developed over the years is functioning and reaching children deep in rural areas. Mary lost already 3 children short after birth and then she got a child with Spina Bifida. When Juliana (or Mama Phoebe) mother of Phoebe (with Spina Bifida and Hydrocephalus) met Mary in the ward she told her that she would be discharged the following day and that she had to come back for review one week later.
After closing the back, often hydrocephalus develops and this needs a second surgery. Juliana realised the distance Mary had to cover and asked her if she had the money to come back for the review. Shyly she looked away from her and said she would find it. Juliana gave her money to fund the travel home and to comeback in time.
Unfortunately Dalmus did not make it back to Bethany Kids and he died on his way to Kijabe for review. If only the guesthouse was up and running then Dalmus would have been within Kijabe and we would not have lost him…… St. Martins is one of the 18 out-reach clinics Bethany Kids is organising. Some are much further like Kilifi for example.
The House of Hope:
There, near the bed of Dalmus started the concept of a guesthouse where parents and children could relax while waiting for their first medical review after surgery. There, Mary would meet other mothers and could be informed about the condition of her special new-born baby.
Information and hope would empower her to take care of Dalmus. Juliana shared the idea with Phyllis (Mama Leon) a 17 year’s old boy born with Spina Bifida. She was immediately enthusiastic and both wanted to go for it. We lose so many children due to distances and lack of money to fund frequent travel for families to and from Bethany Kids.
Juliana and Phyllis found the initial funding to rent a house at walking distance from the Bethany Kids hospital. The House of Hope welcomed already hundreds of parents in 2014 to date. These parents come from as far as Burundi, Ethiopia, Uganda, and Kilifi in Mombasa, Marsabit, and Mara in Tanzania. They get information on all aspects of the life of a child with Spina Bifida and/or hydrocephalus. This is because life is more than a medical condition.
Every Tuesday Mama Phoebe goes to the ward to empower parents and tell them about SHAK and the House of Hope. BethanyKids has the neuro out patient review clinic every Tuesday. This initiative of parents to parents is not a cheap hotel but a place where parents meet. Most guests are mothers who left their family at home to fight for the life of their child with special needs. They need moral support and to see a future for their child. Seeing and talking to Phoebe and Leon gives them hope. When going back home they will benefit from the support of SHAK.
When there is a complication they know that near the hospital there is a home and a family waiting for them. It will help to come back in time for medical review.
In many ways ‘the House of Hope’ will prevent a lot of (medical and non medical) complications just by information and counselling.
How does ‘the House of Hope’ work?
They welcome, free of charge, parents and children waiting for surgery or medical review or those who missed their bus due to late discharge from Bethany Kids.
Bethany Kids will notify the House of Hope about parents who are coming to the guesthouse by phone. House of Hope will then advise if there is room for accommodation. The House of Hope has a capacity of 12 beds at the moment.
When parents arrive, Juliana and Phyllis welcome them and tell them ‘you are at home, please feel welcome’. We are mothers of children with Spina Bifida and Hydrocephalus just like you; let me show you your room, here are your clean sheets and blankets. Please make your bed and keep it neat. After you finish with your bed I will show you the bathroom and how the hot shower works, washrooms and how we flush the toilet, kitchen, garden, chicken house, where we take our meals and also where we throw diapers and sanitary towels.
We start counselling parents by first of all sharing our real life experiences with our children i.e. Juliana shares about her experience with her daughter Phoebe while Phyllis shares about hers with her son Leon. We then share the basics of Spina Bifida and Hydrocephalus: primary prevention and the intake of folic acid, early intervention, and the importance of good nutrition, rehabilitation for bowel and bladder function and occupational therapy.
We cook, clean and garden together.
We have fun, and share a good sense of humour with the parents, our children play with the children at the House of Hope.
The House of Hope programme which has made a huge difference in lives of so many families coming from Kenya and beyond including the larger Eastern African countries depends entirely on donors and well wishers. Currently we are funded by Child Help which is our sole donor.