Casey and Brian Haggard
USA

Our NAIT Story

May 12, 1998 I gave birth to a beautiful healthy baby boy Gabriel. Loving the fact of being a mom I wanted more even though my husband and I were young. June 20, 2001 came Carter, then September 3, 2004 Faith and December 12, 2005 Alexandra. Feeling pressure from family not to have anymore children I got my tubes tied. What a horrific day that was. I was depressed for months at the fact that I couldn’t have anymore children. My depression and the PTLS (Post Tubal Ligation Syndrome) ultimately led to my husband and I almost going through a divorce. I was not able to cope with life and having many female troubles from the PTLS. We were split up for a couple months but by God’s sovereign grace He put our marriage back together. After that, we decided we did want more children and needed to change a few things in our life and so on March 11, 2008 I got a tubal reversal at Chapel Hill Tubal Reversal Center of Chapel Hill, North Carolina. Dr. Berger was only able to reverse one tube, the left side, because of scar tissue but assured us we could conceive again.

In October of 2008 I took that pretty little test and 2 pink lines came up. We were very excited to be having another child. After having a normal pregnancy I went in to the doctor at 35 weeks, normal check up, in excruciating pain. I could barely walk. The doctor after checking me out said, “Well you DO have uterinedydelphus (2 uterus’s and 2 cervices). I am going to go with the left uterus is pushing on the right uterus and causing pain. Let’s put you on bed rest.”

After a week of bed rest and no relief I went back in just in tears and my doctor said. “I think it’s time to get baby out!” I contemplated waiting out the pain one more week just so the baby would be ok but my doctor said no. What a gift from God that was. On May 26, 2009 all was going normal in the c section when they pulled Zachariah out and everything was eerie quiet. I could hear doctors whispering about birth trauma. In my head, with my obstetrical experience I knew c sections didn’t cause birth trauma. I asked if everything was ok and Dr. Rawson looked at me and said, “The neonatologist is looking him over, he is bruised. Don’t worry you and baby are going to be fine!” He gave me a gentle smile and then gave me something to relax me. I could hear everyone talking but couldn’t move or speak. They wheeled me to recovery and I was loopy! They tried to explain that something was wrong with Zachariah and I said “Ok, before you take him to the NICU I need to nurse him!” The nurse said “Oh honey he will die if we don’t get there soon!” In my loopy state, from what my husband told me, I said “Ok, but he needs to nurse first!” They knew that his platelet transfusion was 3 hours away; they had to fly it in because the hospital didn’t have a match for him, so they let me nurse him and off he went to the NICU. After I regained myself I went to see him in the NICU. He was so tiny and black and blue. They told me his platelet count was 10,000 and dropping. They gave him the platelet transfusion and IVIG and automatically his platelets started to regain. They told us that he had NAIT. 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 1 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. Zachariah today is going to be 3 years old in 2 weeks and he is such a great gift from God.

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. I pushed my doctor to do prednisone. He wanted to do PUBS but I was against that and scared.

At 36 weeks and 4 days I was feeling a very familiar symptom in my side. Panicked I ran to the doctor yelling at them the baby was going to die if he didn’t do something quick! They looked at me like I had mice coming out of my ears. I was trying to tell them this was serious. Dr. Pietrantoni, trying to reassure me, said “Everything is fine, you are fine and your baby is fine.” I told him very sternly “NO, it wasn’t we needed to do something now and it was his fault I didn’t know about treatment!” I got his attention then. He ordered and immediate Amnio to check the baby’s lungs. He called Dr. kohen in, a neonatologist, At Norton’s Hospital and he flat out said everything is fine and that Dr. Pietrantoni shouldn’t deliver until 38 weeks. I started crying and he said it was my fault I didn’t do IVIG. I tried to tell him I only have known about treatment since 32 weeks. He wanted for my doctor to do 2 weeks of IVIG so we could deliver at 38 weeks. I basically told him in a not so nice way, if he didn’t do something quick I would sue him for everything he was worth! 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. He is now a happy, healthy 13 month old!

Today, I am currently 21 weeks pregnant with a baby boy, Jackson. I now live in the St. Louis area. I start my first treated pregnancy in about a week. With this pregnancy we wanted to do more extensive genetic testing which showed that I have a very rare form of NAIT. They cannot identify the antibody that has been attacking my lil ones. I am suppose to be in the 50/50 category but without knowing what kind it is I will forever have to do IVIG until they can find the antibody.

In the end, I feel so blessed to have 6 almost 7 children. The Lord has been kind to us. We hope to have more in the future and to help families who are affected by NAIT. It can feel, scary, hopeless, mind wrenching and many other things but I realize the Lord is in control and we are not. My husband and I take it one day at a time putting it solely in God’s hands. If God didn’t think us NAIT moms could do it. He wouldn’t have given us this condition. He is our comforter and our creator and I trust Him everyday!

Casey

Psalm 127:5 Blessed is the man who fills his quiver with them! He shall not be put to shame when he speaks with his enemies in the gate.