I have talked about child home care from many different angles, but what’s the ultimate purpose of child home care? It is to create a society where all children, regardless of their disability or condition, are valued as a ‘human being’ and able to fully enjoy their life with the support of family bond and community network. In order to achieve this, we will need to realize patient & family-centered care through community-based, multi-disciplinary comprehensive care in the form of home care. This is where our approach intersects with SRV.
Purpose of child home care
- To create a society where all children, regardless of their disability or condition, are valued a a ‘human being’ and able to fully enjoy their life with the support of family bond and community network.
- To realize patient & family-centered care through community-based, multi-disciplinary comprehensive care in the form of home car
I would like to show you one case that I can not forget.
The baby she was born after 37 weeks gestation and weighed 3.56 pounds. After the birth, the baby was diagnosed as 18-trisomy syndrome, and was transferred to NICU. Severe Congenial heart disease (ventricular septal defect and patent ductus arteriesus )as well as pulmonary hypertension were found.
The doctor’s assessment was that the baby could live no longer than a week. However, the condition gradually stabilized, and the baby was discharged three months later weighing 4.12 pounds.
A doctor home-visit care by our clinic and home-visit nursing care by the community establishment was started. Despite poor prognostic expectation, the baby grew smoothly and weighed 5.97 pounds two months after discharge. At the same time, she started to emotionally develop, showing clear expression of happiness and anger. Seeing this, the baby’s parents began to seek a possibility of surgery to prolong her life although they had been told by the doctor in the hospital where baby was born that she did not have operative indication. The parents came to me to discuss the possibility. In the current filed of pediatric care, the fatality rate of children with 18-trisomy syndrome is very high in the first year, and so almost no medical institution performs definitive or palliative operation. Naturally, medical interventions become minimal. For the parents, however, this gives an impression that doctors are not taking their baby’s condition seriously. They even think that this is because their baby is disabled and start to feel isolated. This may also lead to disbelief in doctors. I first explained to them that it is not common for medical institutions to perform surgery on children with 18-trisomy syndrome, and suggested they visit the only one hospital in Tokyo which has many experiences to operate CHD of 18-trisomy babies. Although the doctor still decided not to perform surgery, the parents seemed to be satisfied with the doctor’s respectful, clear and considered explanation.
Around that time, the family was planning a first family trip after the baby was born. However, the baby started to suffer from air way disorder laryngomalacia, a characteristic disease of children with 18-trisomy syndrome, and respiratory failure worsened. Consequently, the mask type positive pressure mechanical ventilation was initiated, and I asked them to cancel the planned family trip. As an alternative, I suggested another plan that they come stay at Oiso-machi, Kanagawa, a child respite house which I had been planning to open. Surrounded by the parents, grandmother and 2-year-old brother, the baby spent two nights there in the village. The village is located in a 5-acre land filled with green and is right by the sea.
The baby was dressed up in a swimsuit that the grandmother made, touched the sea, and lied on the beach.
She saw sunrise for the first time in her life – she could never see it before from NICU or her home, which was just another NICU. I supposed to she feel “I’m happy that I was born to see beautiful sunrise.”
The reason of my thought is the following. The parents love wine. The father works in the company which sold wine. They had a wedding ceremony in winery in California. But after their baby was born they had not drink wine together. My stuffs makes them alone with cooler-box filled with wines and beers. Then the mother said “Although we have met various painful I’m happy that she was born”, said the mother to the father. I felt her saying deserved all our effort to make it.
After this trip, the family started to go out more frequently. And they got new friends
Another girl is 13-trisomy that is very severe chromosomal abnormality equivalent to 18-torisomy. They met at the barbecue event which our clinic have every year for patients family and became friends.
Three months after the trip, a couple of days before the baby’s first birthday, she passed away at home. Two days after the family had celebrated her early birthday, she departed quietly and peacefully. Below is an email from the mother:
Thank you for treasuring her photo…
I feel that she is now travelling around the world. She is very curious. She goes to places that she has never been and has that expression on her face, the face that she showed us when she saw the sunrise for the first time.
When I see that photo, I really feel that I’m saved. I always wondered if she felt happy that she was born to this world. That was a very tough feeling for me. That’s why I’m glad that I was able to take her out and let her see many things. I can now say that she was happy.
…
I’m very grateful for the opportunity you allowed me to have. I told her to say thank you. Again, thank you for everything.
Finally I add the mother,the father and the brother all family member are well.
Thank you for your attention.