It has been awhile since I’ve updated. I know. But life is busy. And when your computer sounds like an airplane taking off, you tend not to turn it on. But since Jon and I have a new computer, well new to use, I should be able to update more. His mom got a new one and we got her old desktop. This one doesn’t sound like an airplane taking off and it’s a flat screen monitor. Not like my old one that was about 2 feet long in the back. So this is a step up for us. Why do I want to update more? Well let me tell you! Our family is growing, and in June we will have a new little baby. Yes, that is correct! Hailey is going to be a big sister!
With this pregnancy comes new challenges. 1. Even when I am so tired I can’t keep my eyes open, I still need to be awake for Hailey. Not like last time when I pretty much slept on the couch after work every night until bed time. 2. This pregnancy brings weekly infusions for me. My first infusion was last week and I will have them every Thursday until this baby makes its appearance. Why do I need infusions? Let me start at the very beginning.
After Miss Hailey was born, her amazing pediatrician noticed red spots on her body. Along with the severe bruising from such a traumatic birth he knew something was not right. So he ordered a CBC test. Her platelet levels were at an extreme low of 14,000. Normal level is 150,000-400,000. Platelets are what clot your blood. Without those, you can bleed to death. He thought that number had to have been a mistake. So he ordered another one. That one came back even lower. So she was rushed to Helen DeVos Children’s Hospital. At that point, Jon left with her and I was stuck at Metro. Long story short- she received platelet transfusions and an IVIG (intravenous immunoglobulin) and was able to come home 4 days later. Why did she have such low platelets? Well after genetic testing on myself and Jon, come to find out we have incompatible blood platelets. {Yes- this is different from the Rogam shot – or however you spell it. If I could take a shot to fix this issue I most definitely would. That sounds a bit easier then 8 hours of an IV in my arm.}
Hailey was more than a miracle. She beat the odds. This condition is called Neonatal Alloimmune Thrombcytopenia. It occurs in 1 out of every 5000 births. Go figure that we are that lucky one. I think I read somewhere that an untreated pregnancy has a 5% survival rate. That’s low. But a treated pregnancy has a 95% survival rate. I want those odds. Thanks to www.Naitbabies.org for this wonderful explanation of how this nasty bug works.
When a woman becomes pregnant, genes (inherited traits) from her egg are combined with genes from her partner’s sperm. Together a unique embryo (future baby) is formed. This embryo carries with it genes from both the mother and the father. These genes include things such as hair and eye color, body build, blood type and platelet type.
Platelet alloimmunization happens when a mother’s body forms antibodies (a protein substance that reacts to unrecognized proteins in the body) in reaction to antigens that are different from her own.
These antibodies are usually formed when the mother’s blood circulation comes in contact with blood from another person that is different from her own. This can happen with blood transfusion, or during a miscarriage, abortion, or after the delivery of a child, when the baby’s blood mixes with the mother’s. It can also happen during pregnancy, as the baby’s blood can cross the placenta and come in contact with the mother’s. If the mother’s platelet type is negative for a certain antigen and the baby’s platelets are positive for that antigen, the mother may form antibodies against the baby’s platelets.
During pregnancy, these antibodies cross the placenta (afterbirth) and attach to the platelets in the baby’s blood.
The antibodies can cause the unborn baby’s platelets to disappear from his or her blood stream, resulting in a low platelet count. This is called thrombocytopenia. The disease process that happens in the fetus or baby is known as Neonatal Alloimmune Thrombocytopenia. It is a direct result of the platelet alloimmunization in the mother. In about one fourth of cases, the baby can experience spontaneous bleeding into the brain; in about one third of these cases, this leads to fetal death.
So this is why I am having infusions done. The IVIG that I am given is made up from antibodies of many people. It is not exact as to how it works, but it I’ve read that it crosses the placenta therefore raising the baby’s platelets. It also helps the baby have zero bleeding in the brain. My nurse said that it raises my platelets which therefore raise the baby’s platelets.
My first infusion went well, until about 10 hours later. I came down with a nasty headache. Not a take some medicine and it goes away kinda headache. This was one of the worst migraines I have ever had. It’s hard to describe the horrible pain I was in. It lasted for about 18 hours. Needless to say I am hoping that this week’s infusion doesn’t bring those same side effects.
Everything is on the table now. If you have any questions just ask. I am still learning about NAIT. I am no expert. But this is life and these are the cards Jon and I were dealt. And please don’t think I am complaining. We could have things way worse. We are lucky. We have amazing doctors through Spectrum Maternal Fetal Medicine who are taking great care of us.
Until next time! God Bless!
