*~*Mrs.Manners*~*

ali2005jason

Do you happen to know the name of the condition your family member has? My son was born with a blood disorder that was caused by my body taking away his platelets. He was born full term and I went on to have another baby. My daughter was healthy thanks to the preventative measures they took while I was pregnant with her.

Thank goodness the baby was born safe. How selfless of you to consider being a surrogate for them for future children.

Mrs Manners

I think it's Neonatal Alloimmune Thrombocytopenia. Is that what you had? I read online that with steroid and IVIG therapy, successful pregnancy might be possible but would love to hear IRL experiences to share with them.

ali2005jason

Oh my, yes, that is what my son was born with. I've only talked to someone one other time with this condition. Now, that's not the condition that the mom has. I was never told what the name of what I have is. But, NAIT is what the baby is born with.

Caleb was taken to a children's hospital at 8 hours old after they found petechia (small pinpoint hemorrhages under his skin)  and the roof of his mouth bruised after nursing 3 times. He was in the children's hospital for 2 weeks. He also had a brain hemorrhage that cleared up on it's own. They ended up giving him IVIG and transfusions of my platelets and this helped cure him. He has had no lasting effects.

When I got pregnant with my daughter, I was high risk from day one. I only saw a maternal fetal medicine specialist the whole time I was pregnant. I had numerous ultrasounds to check for normal growth and such. Starting at twenty weeks, I was hooked up to an IV every friday for about 8 hours. It sucked, but it was well worth it. After the first "treatment", I had to go in for a chordocentesis (basically and amnio but they checked Rory's platelet count while in utero). This was very scary for me. I did start to contract they told me but they gave me trebutaline and I was fine. Her platelet count was right on target so they continued the treatments. Now, one thing about these treatments, is that I got MASSIVE headaches from the the first few times. This is because IVIG is basically pure sugar. But, I started drinking lots of water before my treatment and they got better. Still, all of this was worth it. I had Rory by c-section at 38 weeks and she came home the day after she was born.

It is definitely a scary experience. But, especially knowing other people that have overcome it can help. To top it all off, I was 17 when I had Caleb. Very scary thing for a parent to go through, let alone a teenager.

If you, or they, have any questions, please let me know.  You can either page me on the parenting board or send me a PM and I'll give you other contact info. Please tell them to stay strong and positive that there's still a chance for future children if that's what they want!

Mrs Manners

Thank you so much for sharing your experience! Once their LO gets out of the NICU and things calm down, I'll get in touch with you. I'm so happy that you and your beautiful kids are living proof that this can be overcome. I have a friend whose 2 boys get IVIG treatments each month for immune issues and they often suffer headaches too