We left our last note waiting to hear from the neurosurgeon on his opinion on doing surgery for Henryk to have a shunt, which would relieve pressure in Henryk’s brain and possibly help stop the vomiting, but no guarantees. He did not come on Friday as planned, or Saturday as rescheduled. He waited until Sunday to come see us. We believe now that he was allowing us time to digest what we had learned from the MRI.
We learned in our meeting that there are two reasons that people develop hydrocephalus. One is that their brain is unable to absorb the fluid normally produced by the brain. The second is that there is a cyst or some obstruction to the brain that blocks the fluid. We learned from the neurosurgeon that Henryk does not fit in to either of these categories. He has a much more rare case, which is that there is debris in his brain (like brain tissue) that is plugging the absorption in his brain. The neurosurgeon could not recommend the procedure because this debris would be just as likely to plug a shunt. He cited a similar case as ours in which the patient needed 7 brain surgeries in 2 weeks to clear the debris. It is a lifetime commitment to a lifetime of problems.
The neurosurgeon explained to us what Henryk’s life would look like if we pushed it and did the shunt anyway. He would get the shunt, and also need a feeding tube. Later down the line they would expect a tracheotomy. All of this would accomplish keeping him alive but no more. Based on their experience, Henryk would live in a bed for as long as these interventions could keep him alive. In short, he would live on life support.
This left us in an excruciating position. To do anything to keep him alive for as long as possible is our first inclination and strongest desire. We would give our whole lives caring for him and laying in bed with him, loving him. But would we help Henryk’s situation? All the care providers stopped pushing for intervention after seeing Henryk’s MRI. It was clear that we got their opinions without them saying it.
We began to think of what would be most comfortable for him. We also started to think about what we would want if it were one of us. If I got in a horrible car accident and my brain was gone, would I want to be kept alive on life support in a hospital or would I want to go home and be with my family?
So we decided, after many hours of discussions with each other, and consultation from the doctors, our parents, and friends, that we would not go down the path of interventions. We came home today with Henryk on hospice. The goal of our care for him is comfort and care at home. We have home hospice nurses coming to our house regularly to help achieve this for him.
Since April there has been so much uncertainty about Henryk’s condition and we think that we have now learned most of the terms for Henryk’s conditions. He has encephalomalacia, porencephaly, epilepsy, and hydrocephalus. In short, we have learned now that Henryk has a degenerative brain disorder that is extremely rare with no cure where Henryk’s brain tissue softens and essentially breaks down and falls apart. This seems to fit what we have seen. At 20 weeks his brain was perfect; at 24 weeks we saw the start of the breakdown on the left side yet the right side perfect (confirmed with the fetal MRI at 26 weeks); at 36 weeks we saw it starting on the right hemisphere and the back; at birth we saw greater impacts on both sides; and a few days ago with the first full picture of Henryk’s brain via the MRI we saw little brain tissue left.
Please pray for us however God leads you. We aren’t clear on how this will progress – timeline and further symptoms unknown.
We are now seeing that Henryk’s birth really was a miracle, and the fact that we got to meet him and even tonight hold him is a real blessing. We are so thankful for Henryk, and we plan to cherish our time with him. We absolutely are in love with Henryk.
Hebrews 4:14-16. Since then we have a great high priest who has passed through the heavens, Jesus, the Son of God, let us hold fast our confession. For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need.