Charlene Bellavance
British Columbia
Canada

My NAIT Journey

My name is Charlene Bellavance and I would like to share my NAIT history, in hopes that it gives people awareness of the importance of antenatal testing for NAIT.

I had three second trimester losses before I was diagnosed with the platelet type and antibodies that cause NAIT in my babies. In the late 1980s, I had my first loss due to a severe intercranial hemorrhage. The doctors were unable to give me a reason as to why this occurred. My husband and I were heartbroken to lose our baby boy. Our dreams were shattered. We were in shock as no one on either side of the family had experienced a loss. I come from a very large extended family and my Mother had seven children and had never suffered a miscarriage or loss.

After working through the grieving process, we decided to try again. My next pregnancy was an early second trimester loss and this time, they were unable to determine a cause for the baby’s death. It felt as though our world was crumbling apart. We were so afraid that we may never be able to have a family. We desperately wanted to have a large family but were beginning to realize that this may not happen. We waited awhile before trying again. The following pregnancy, I delivered a full-term, healthy, baby girl. We thought that all was fine after her birth until I became pregnant a couple years later and suffered another second trimester loss. This baby too suffered a severe intracranial hemorrhage. We were devastated. The grief felt all too familiar. We felt so many emotions of grief, anger, frustration and fear.

After losing this baby, I had extensive testing done and they discovered my platelet typing was HPA 1b1b and my husband was HPA 1a1b.This put us in the “50 percent group” and gave us a 50% chance of having an affected baby/ loss with each pregnancy. It was nice to have a reason for the loss of our babies but it was still very terrifying news. This explained why we were able to have a full-term baby that was not affect by NAIT, as she has the same platelet type as me. If my husband passed on his HPA “b” then the baby would be fine, but if he passed on the HPA “a” then the baby wouldn’t survive, as I had antibodies present.We were not offered IVIG as we were told it was still in the trial stages, therefore our only option was to try again and hope for the best. I felt like it was my fault for having antibodies that attacked my own babies. It caused a great strain on our marriage. We needed time to process, heal and to gain confidence to try again. After long contemplation , we agreed to try one more time. Luckily, we did as I delivered another healthy full-term baby girl. She too has the same platelet type as me. We were so relieved and so thankful to have two healthy children.

I was told that one day, my daughters will need to have platelet testing done. I was horrified that my daughters may suffer losses as I did. I also felt a tremendous amount of guilt that I had passed this on to them. When my eldest daughter became pregnant with her first pregnancy, I was hit with a mix of emotions. She too, was very scared and we had to advocate to have platelet typing done, as the midwife and family doctor were unaware of NAIT. After much advocating, she had her typing done and discovered to be HPA 1b1b and her husband was HPA 1a1a therefore in the”100% group”. She also had the presence of DRB, which put her at even greater risk of having a baby affected by NAIT.

The hematologist told her that she was the “perfect storm” for NAIT to occur. They treated her with IVIG from 17 weeks gestation, based on my history of losses. It was a long and stressful pregnancy as she became very sick from the IVIG.We all were very scared. She tolerated the IVIG better as she progressed and then she delivered a healthy baby girl at 35 weeks, with a normal platelet count! We are so thankful we advocated for her baby and that they treated her with IVIG.

My second daughter and her husband were tested even before she became pregnant. The haematologist had recommended this, again based on my history. She too was HPA 1b1b and her husband HPA 1a1a.
She too had the DRB presence to put her at a higher risk for NAIT to occur. We all were very upset as we knew the tough and scary journey ahead. It broke my heart to hear this news again. As you can imagine, they were very nervous to try to conceive, after watching what her sister had to endure with the side effects of IVIG, as well as the constant fear of having an affected baby or a loss.

They did decide to have a baby and they had to navigate difficult waters, as they came in contact with physicians that didn’t fully agree with giving IVIG in a first pregnancy. Some MFM doctors felt the risk was low with regards to NAIT occurring, so we had to advocate for treatment instead of taking a gamble. They finally agreed and treated her too, with IVIG starting at 17 weeks gestation. The pregnancy caused a lot of anxiety for us all, as we knew IVIG can work but also can come with great risks. They had a healthy baby girl born at 37 weeks with an initial normal platelet level. The platelet levels dropped to less than 5 after a couple of hours. There was some discrepancy as to whether these were correct or not. She had a matched platelet transfusion and then did very well after. Thankfully, she did not have a brain bleed.

My eldest daughter became pregnant a second time and was again treated with IVIG from 17 weeks gestation. There were times in the pregnancy that the ultrasounds showed a possible brain bleed but thankfully, the MRI confirmed it was just fluid. The level of fear was increased with this constant worry of a possible brain bleed. She had a healthy 35 week baby boy who had a low normal platelet level. He had a maternal fetal bleed just prior to delivery and needed a blood transfusion. He did very well after and he was a double miracle baby, as he not only beat NAIT but also survived a small haemorrhage.

I still feel the guilt of passing this platelet type on to my daughters and I can’t even begin to explain the amount of fear that I felt with each of their pregnancies. My memories of own experiences would creep up on me on a regular basis and I struggled to keep my anxiety and fear under control. We are so thankful for IVIG, as it has allowed my daughters to have healthy children and of course for my husband and I to have these beautiful grandchildren.It was very frustrating to watch our daughters have to advocate for testing and treatment that we know works and saves lives. They came across many doctors, even MFM doctors that were not completely aware of NAIT and how to treat it. It was very difficult to watch them go through this extremely challenging and scary journey. They both suffered greatly with the IVIG side effects. There was tremendous stress and worry throughout the pregnancies. We all “held our breath” with each pregnancy until the baby was born and the platelet count was determined. It is a journey that I wouldn’t wish upon anyone, but I am so proud of my daughters for being such determined and dedicated, loving mothers. They are an inspiration to me.

We are also very happy to know that our granddaughters will not have to go through this one day, as their platelet type is HPA 1a1b. We all are so appreciative of NAIT babies, for the wealth of education and support that we have received through the years. We often referred to the information from this site, as we advocated for treatment and monitoring. This group is full of strong and brave women, just like my daughters.
I hope that with more awareness, that there will be routine testing for everyone, as well as, treatment that is readily available, for all those women who are at risk of their babies having NAIT. I believe that sharing the education around NAIT will help to not only change lives but also save lives.

Thank you for reading my story.

Sincerely,
A very thankful Mother and Nana.

Charlene