When one gets sick we all get sick....

Last Tuesday we took my sweet baby girl Alexandra to the ice skating ring for her birthday. I say baby girl but she's 9! Anyway, we were all having a great time until we got home. Brian, Gabriel, Faith, Alexandra and Zachariah all got sick. Now there are a lot of advantages to having a big family like there is never a dull moment, there is always someone to play with, bulk discounts etc. But, when one gets sick we all get sick......And sometimes it can go on for weeks......

Thankfulness

I hope everyone had a great Thanksgiving! I can't even begin to show my gratitude to the Lord for the children He has blessed me with. I want to write about something that is dear to my heart. NAIT.

I am often reminded of God's grace when I think of NAIT. Especially, seeing the group of women who gave birth around the same time I did. Seeing their babies makes me a little teary eyed. It is something I feel strongly about raising awareness for. So please pass this on to friends. This is a condition that not a lot of people know about and it can be a silent killer.

My husband and I decided back in 2008 to get my tubes untied. I had PTLS (Post Tubal Ligation Syndrome). And yes! PTLS is a real thing and women are suffering from it every day. We traveled to Chapel Hill North Carolina to get the procedure done, which was a success. Dr. Burger from Chapel Hill Tubal Reversal Center has been studying this for years. After the reversal my husband and I were convicted to have as many children as the Lord would give us. 

I got pregnant with Zachariah in 2009. It was a pretty uneventful pregnancy. Right at the end I started to have some complications which led to us having an emergency c-section at 36 weeks. When Zachariah was born he was bruised everywhere and very lethargic.

The next day a pediatric hematologist told us that Zachariah had NAIT (Neonatal Alloimmune Thrombocytopenia). Neonatal Alloimmune Thrombocytopenia (NAIT) is a blood-related disease that affects expectant mothers and their babies.

Most people are familiar with the red blood cells that make up the majority of the blood in our bodies, but may not be aware of a second type of cell in our blood stream called platelets. These small cells are responsible for stopping bleeding in the human body.
Neonatal Alloimmune Thrombocytopenia is a disease that develops when platelets in the pregnant mother and her baby become incompatible and cannot exist together. 

Zachariah's platelet count was 10,000. Normal platelet count is 150,000 and up. My body was attacking him and he was bleeding out. He had a platelet transfusion and Ivig. Ivig:

1. Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled, polyvalent, IgG antibodies extracted from the plasma of over one thousand blood donors. IVIG'seffects last between 2 weeks and 3 months.

They said it is very rare and that we were so lucky to be at Memorial Hermann in The Woodlands, Texas because they wanted to bring in a pediatric hematologist and that there were only 3 in the US and one happened to be in Houston, Texas just 30 minutes away. Dr. Brown from Texas Children’s Hospital confirmed that yes he indeed had NAIT and that we were to get genetic testing after we left the hospital. 

After going through NAIT my husband and I didn’t know what to do. We were convicted of having as many children as the Lord would give us and we would not stop a birth with any form of birth control. I prayed about our situation and at one point after Zachariah was born found out I had Hyperplasia of the uterus’s without Atypia. The on start of uterine cancer. I pleaded to the Lord and found out that in high doses birth control can kill the growth. Feeling very convicted that I didn’t want to do birth control I was devastated. But the Lord is gracious and I felt at peace doing the birth control because it wasn’t stopping a birth it was going to help me to create a new life. After the hyperplasia was fixed I found out that I was pregnant in March of 2010 just 10 months after Zachariah’s birth. What a thrill that was but I ended up loosing the baby. They couldn’t rule out NAIT but said it was probably due to something else. Then in May of 2010 I fell pregnant again and was scared to death. I lost that baby as well.

In July of 2010 after moving to Louisville, Kentucky I was having some familiar symptoms. I found out I was pregnant and was scared. I found a perinatologist in Louisville who put me on a baby aspirin and progesterone. Everything was going great. I still didn’t know a lot about NAIT and apparently neither did my doctor. I was 32 weeks when at my weekly check up my doctor informed me of IVIG. Thinking this was great I wanted to do it but he said it wouldn’t work. I was a little dumb founded! That’s when I came home and found the NAIT support group on Facebook. They were such a tremendous help. I started getting information that I just couldn’t find online or anywhere else.

At 36 weeks and 4 days Dr. Pietrantoni ordered an immediate Amnio to check the baby’s lungs. They got the amnio back 2 days later and his lungs were developed and they did the c section at 37 weeks. It was a good thing because Titus was born with a platelet count of 24,000. He had a platelet transfusion, IVIG and spent 5 days in the NICU.

After moving back to the St. Louis area we met a Doctor that was extremely knowledgeable about NAIT. He is an amazing Doctor! Dr. Michael Paul at Missouri Baptist.

Jackson was born August 15, 2012 and had a platelet count of 148,000! I did weekly 18-24 hour Ivig infusions from 20 weeks until I delivered him at 35 weeks. He was small but his platelets were normal. He spent 2 days in the NICU just to make sure that he was ok.

Madison was born August 9, 2014 and had a platelet count of 199,000!! Woohoo!! The treatment with her was by far the worst side affects that I have dealt with. I ended up having brain swelling and had to be put on mannitol. It was a form of meningitis brought on by the IVIG. But it was so worth it! She spent no time in the NICU!!! Unfortunately, I had a uterine rupture with her. That has been the hardest for me. Not being able to have anymore. I cherish everyday that I get with these little miracles!

Thank you for listening to my story. If you know someone who is suffering from NAIT let them know they are not alone and there are support groups out there like naitbabies.org

There are also facebook groups that are there to help as well. If anyone has any questions feel free to ask. Blessings!!