Caroline was born in the hospital with patent ductus arteriosus (PDA), a condition caused when a short broad vessel in the foetus that connects the pulmonary artery with the aorta and conducts most of the blood directly from the right ventricle to the aorta, bypassing the lungs, fails to close after birth. This meant that Caroline had a life expectancy of only two to four weeks. The condition, which has a range of severity, was in this case, inoperable. Due to complications, Caroline was not strong enough to survive the operation.
Faced with this devastating news, Caroline’s young parents did not want her to die in the hospital but found it impossible to care for her at home. However, they were very positive about her staying at Mappa Mondo, one of the homely, child friendly in-patient palliative care units situated in The Netherlands.
Mappa Mondo provided a special room in which her parents could stay with Caroline until the end. The nurses and supportive workers assisted the parents by giving them time to be alone with Caroline, offering them emotional support and providing a listening ear. This sort of support is often enough in this kind of situation – just being there and acting when called upon. Answering questions and showing respect for the wishes of the parents were the foremost concerns of the Mappa Mondo staff.
Caroline died peacefully and pain free, in the arms of her loving parents.
More about Mappa Mondo
Mappa Mondo is an initiative of the Dutch Red Cross, providing care for chronically ill children between 0 and 18 years, with life threatening and life limiting illnesses. The organisation provides homely and child friendly semi-detached In-patient Units, each housing eight to ten children. The three Mappa Mondo homes are situated in Wezep, opened in 1997 and managed by Ina Gunnik; Rijswijk, opened in 2002 and managed by Andre Potters; and Waalre, opened in 2006 and managed by Tamara van der Laar.
Mappa Mondo homes provide quality palliative care to children, including pain control, physiotherapy, emotional, social support and end of life care, in a warm and loving environment. The child’s family is also included in this special care. Parents and siblings are supported and guided to cope with the difficulties of having a child with a life limiting condition. Bereavement care is also provided.
Mappa Mondo believes in helping a child to develop normally, according to their abilities. This includes the provision of education, stimulation, play and communication. Mappa Mondo functions within a network with palliative care providers such as day care centres, special kids homecare (Flexi-Kids), social workers and schools. Mappa Mondo operates with a highly professional multi disciplinary team and committed volunteers.
During my visit to Mappa Mondo, I experienced what make this organisation a frontline organisation in the provision of palliative care for children in The Netherlands. This was:
- The professionalism and passion of the staff
- The child friendly and loving care of children
- Networking and partnerships with other organisations like VGVK, Kinderthuiszorg and Stichting PAL.
- Treasuring the right of children to be happy and content regardless of their condition.
- Passionate people and happy children.
To find out more about Mappa Mondo homes, visit their website .
Leave a Reply