Lainey is our fourth and final addition to our family. My husband and I are creeping up on our 15th anniversary together this March. (Yes, I got married young and started having kids young but we knew we wanted a lot of kids and I had some fertility issues - anyway, another story for another time)My 5 year old has viral induced asthma but other than that, they have all been a picture of health their entire lives. How shocked we were to get the phone call six days after Lainey's birth alerting us to this mysterious metabolic disorder that the doctor three times told me was "life threatening" I ended up in tears on that call and had to pass the phone off to my husband.
That first week was filled with reading everything we could get our eyes onto regarding MCAD and lots and lots of tears on my behalf. It was just so overwhelming this fear that at any point she would need to be rushed to the hospital and put on an IV to save her life. Take too long and risk coma or death. I honestly don't think I slept the first two weeks.
At some point I was able to center myself - I think it was when I started hearing about how so many other parents had lost their beautiful children to MCAD but not because they didn't get to the hospital in time, BECAUSE THEY DIDN'T KNOW THEIR CHILD HAD IT.
Our metabolic specialist has told us that he has never lost a patient from MCAD that was diagnosed with it prior to the death. Key in managing the condition is knowing that a child is afflicted with it and watching for the signs of distress.
If you are reading this and you have a newborn diagnosed with MCAD, read the above paragraph again. And again. Once you know about the disorder, you can manage it and your baby will be fine.
