Decisions

You are perfect! I cannot imagine a more perfect child than you Mathias. It makes no difference that you are not genetically perfect in medical terms. You are my precious baby boy. To me your mother, you are a normal baby boy. I don't think that the extra care needed is a burden nor is it difficult. They are just part and parcel of motherhood to me.

When we first confirmed that you were suffering from Menkes. I blamed myself. In most Menkes cases, its the mother who is a carrier and passes it to the male child. As seen in my earlier posting, the mutated gene is carried on genetically. But in my case, it was a total freak case. We sent my blood together with Mathias blood for testing in the States. While waiting for the results, I kept blaming myself for passing it to him. I was so upset. But it turns out that I was not a carrier and that it was a random case. How in the world does that happen?

That settled, we had to decide on whether we wanted to put you on the copper injections. We asked Dr Lai, to source for the copper supplements. They took a long long time sourcing for it. Eventually, they found that it was manufactured in the hospitals where they had Menkes patients. And not pharmaceuticals as they had searched for a long time in that direction.

Once found, we realised that we couldn't bring it into Singapore. Guess what? We couldn't bring it in cause it was not approved by the medical or health board here. No permit to bring it in. The hospital involved, gave us the ingredients list for us to manufacture it here but we could not do that either as there is not permit or approval. The hospital, namely KK had to apply for approval and that itself would take a long time.

In the meantime, while all these were happening, we were having a struggle deciding whether to put Mathias through the injections. As we heard from the doctors that the supplements work best when administered at birth. When started later, it may or may not have any affect or there could be side effects and poisoning. Plus he would need 2 injections a day, everyday. Did I want to put my child through that? All that pain?

I struggled with all these questions. What is the best for him? What should I do? Those were horrible days.

Finally, we made up our minds that we would not put Mathias through the injections. Not that I didn't want to save him. But that we would want him to live his life as pain free and comfortable as possible. Knowing that it is going to be very tough for him and limited time with us. We wanted him to have as good a time with us here as possible. I sometimes still wonder if I made the best possible decision at that point? Could I have made his life better if we started him on the injections although it was so late already? Would I have prolonged his time here so that I could still hold him now? Would he have been stronger? All these I ask myself still.

So finally when the doctors got back to me that if we really wanted to go ahead, they would have to apply for the permit, I told them our decision not to put Mathias through the injections. We also discussed that if I wanted another child again, we would then do the testing so that we know if the child is a carrier. If he is, they would start manufacturing the supplement.

At that point in time, there was another family with a child also suffering from Menkes. I never got to meet them. They had also opted not to use the supplement. I spoke to the doctor who was seeing them just to get some ideas. Had hope to link up with them but it seems that they were not open to the idea. It was a very lonely time. Not knowing much about this disease, and trying to cope. No one to talk to about what was happening was all so scary. I went online to search for support. It was a shocking discovery that no one here in Singapore had any inkling about Menkes at all. After much searching, I finally found a Menkes Organisation in the States. It was set up by another mother just like myself. Who's child also suffered from the same disease and who was trying to create more awareness of this disease to the masses. I am so thankful I found them. From there, I got to know many moms who were going through the same issues as me. The support there is tremendous. We linked up through facebook. It was such a relief to know that I was not alone. Thank you Jamie Eckman!!!!!!! Check out the website: http://themenkesfoundation.org/

After we made our decision not to administer the supplement, we tried to make Mathias as comfortable as possible. We continued as before until something crops up. He took his milk and was pretty happy most of the time. Here is a photo of us when he was less than a month old.

My dad feeding him.

On one of our outings.