A controversial health decision

Many weeks ago I was called by a social worker about a baby who needed help. She was severely malnourished, immune suppressed and hospitalized several times to try to stabilize her and coach the young mother in caring for the baby. I was asked if we could take the baby IF the doctors believed that the mother just couldn’t properly care for the baby and the baby would die without intervention. Several weeks later I received the call to pick up the baby and I asked the social worker if the child was otherwise healthy, explaining that we do not knowingly accept disabled children? (If we receive a baby and later find out that they have disabilities or developmental delays, we keep that child knowing that the Lord has placed him or her with us.) She assured me that the doctor assured her that the baby was just fine, she just really needed to be treated for malnutrition and proper adherence to her other medications.

 

Upon our doctor and nurse team assessment, it appeared that the baby was far from “fine”.  She was 12+ months old and weighed 11 pounds. The examination further revealed that the child was blind, deaf, spastic, having regular seizures and was obviously in a lot of pain when touched. We did what we always do and just started loving her, feeding with F100 formula (which she responded well to for the first week) as well as antibiotics and antiseizure medication.

 

After a week passed things started to change. She stopped eating well, her pain seemed to increase as did the seizures. On Friday it was decided that she needed to be hospitalized quickly as here overall health was so poor that we feared things might turn badly quickly. As soon as she got to the private hospital she was examined again and then sent for a CT scan. The results were devastating.  In addition to all the other things that she was suffering from, she was diagnosed with Dandy-Walker malformation.

 

“Dandy-Walker malformation (DWM) is a brain malformation that occurs during embryonic development of the cerebellum and 4th ventricle. The cerebellum is the area of the brain that helps coordinate movement, and is also involved with cognition and behavior. The 4th ventricle is a space around the cerebellum that channels fluid from inside to around the outside of the brain. DWM is characterized by underdevelopment (small size and abnormal position) of the middle part of the cerebellum known as the cerebellar vermis, cystic enlargement of the 4th ventricle and enlargement of the base of the skull (posterior fossa). DWM is sometimes (20-80%) associated with hydrocephalus, in which blockage of the normal flow of spinal fluid leads to excessive amounts of fluid accumulating in and around the brain. This leads to abnormally high pressure within the skull and swelling of the head, and can lead to neurological impairment.” National Organization for Rare Diseases

 

The pain she was experiencing was likely from fluid build-up in her brain. Her blindness and deafness could also be a result of undiagnosed hydrocephalus linked to Dandy-Walker. She would need to see a neuro surgeon, get a stent if possible and then a long-term care plan, if she lives. We were in a quandry. The hospital where she had been admitted did not have access to a CT Scan, and assumed that her entire condition was due to lack of food and medical care, so technically they didn’t know that she was a severely disabled child when they asked us to take her. Unfortunately, we do not have the care staff, the expertise or the facilities to provide all the care that this little one needs. What were we to do? We prayed about it, I sought council from many medical professionals in the U.S. and Canada, and then had to make the hard decision. I called the social worker and the original doctor and shared what we had discovered. I then asked them to please make a plan to care for this child as we could not.

 

We had discussions internally that our team could certainly provide the best love and basic care, and if she is at an end of life stage, we could love her well. But losing a child is SO hard on our care team, our leadership team and on Ian and I personally. No one wants to lose a baby. And we don’t know that she is at that stage, she could live for months or years with proper intervention, but it is intervention that we cannot provide.

 

Yesterday the social worker and the young mother, pregnant with another baby, went to the hospital and met with one of our nurse and the Aunty who was staying with the baby. They packed her up and took her to a government hospital where we hope she will be able to see a neuro surgeon and get treatment. This was such a hard decision for us, and we wonder why God allowed this little one to come to us for such a short time, but I know in my heart that we made the right decision. As we all know, making the right decision is often harder than making the wrong decision. Please join us in praying for the baby whom we were calling Victoria as we ask the Lord to take away her pain and heal her body.

 

In much happier news, I am thrilled to be able to tell you about a magnificent painting that we commissioned from painter Karen Radiloff (a good friend of Chris Cheek). I follow her on Facebook and Instagram and love every painting that she posts, so I reached out to her to see if should do a special painting for the Oasis #2 (O2) building -our very large dining hall and for our older kids. I told her about a huge fireplace that we are including in the construction and asked for a painting that was 6 feet long and 3 feet high!  She responded with a resounding yes AND told me that she would paint it and donate the painting to us!!! Yesterday I received photos from Karen of the finished painting valued at $,1800! We believe that art is a very important part of culture and it also teaches our children about beauty, creativity and the joy that God has created the world with.

 

72" x 36" painting by artist Karen Radiloff

 

Karen often puts scriptures on the blank canvas and then paints on top of them. In the second photo you can see Jeremiah 29:11 poking through;

 

“For I know the plans I have for you,” declares the Lord,

“plans to prosper you and not to harm you,

plans to give you hope and a future.”

 

Isaiah 29:11 can be seen peaking out through the painting.

 

This will come over to us when another container comes our way. In the meantime, I will print out a smaller version of this to enjoy until the real one arrives.

 

 

Emseni 6 on the left O2 on the right

I hope you will look for beauty in your surroundings today and see the creativity and joy that God created around you.

 

Live from Eswatini … praying for Victoria.

Janine