“Love is an engraved invitation to grief.” ― Sunshine O’Donnell, Open Me
When Adriana was born, I was very fortunate to have my mother in law with us. We had no idea that Adriana was going to have Down syndrome (DS). Awilda Ortiz Martinez, better known to us as Grandma Avy was a great lady. She had an MSW from the University of Puerto Rico and for many years had worked as a school counselor. She was one of the greatest advocates for children I have ever met. She later told me she had never seen anyone go through the stages of grief as fast as I did.
The fun part was no sooner had they given us her DS diagnosis, she was turning yellow with jaundice.
Slight jaundice is very common in newborns and requires no follow up. Babies with high levels of bilirubin in their blood will require phototherapy and in severe cases they may need an exchange blood transfusion.
So once again, I’m like no, we did all the blood test, why does she have this jaundice. It can’t be. We are both Rh positive. Yes, I got angry, yet again. I was so upset that we needed to prick her little body again and getting more blood. Are you kidding me, you are going to suck her dry!
I’ve always been a very spiritual person. You guessed it, I started making promises I could not keep. I promise I will never have any more coffee if my girl gets better, I promise I will… just fill in the blanks, I think I said it. Of course none of those promises were realistic; I just needed something to hold on to because I was not able to process the information that was bombarding my brain.
My confidence as a new mom was deteriorating by the minute. I kept telling my hubby, how I did take care of myself, ate the right foods, walked, and had good prenatal care. I was devastated. The doctors were great, came in and explained everything about the blue lights/phototherapy, but at that point we still didn’t know why she was turning yellow. Blood work was done and we discovered she had AB type incompatibility. Blood types are categorized by A, B, and O, and given an Rh factor of positive or negative. This is not very usual, when A-B-0 and Rh incompatibility happens when a mother’s blood type conflicts with that of her newborn child. It is possible for a mother’s red blood cells to cross into the placenta or fetus during pregnancy. Phototherapy was not working as well as the doctors wanted, so at this point, the next step was to do a full blood transfusion. The self blame continued and I was not feeling well. I don’t think I came out of this stage for a while. Looking back I can see that it wasn’t until we started with her Early Intervention therapies that I knew I was on the way do really doing something positive for my girl.
And it was no picnic to watch as the doctors poke her cute little head and start the blood exchange process. Knowing she would get better was probably the only thing that eased the situation and helped me accept that things were moving in the right direction.
The only problem with this was that we would have to wait for her blood to cycle through her body to do the chromosome mapping we needed to find out what type of Down syndrome she had.
Don’t be surprised if you find yourself going through grief more than once in your life, it just shows you care deeply for someone.
Note: I incorporated these links in the words in the article.