I Had ITP (Idiopathic Thrombocytopenic Purpura) During Pregnancy

I wanted to share my pregnancy experience because I’d never heard of Idiopathic Thrombocytopenic Purpura before and I found out I had it when I was 20 weeks pregnant.

ITP, sometimes referred to as Gestational  thrombocytopenic purpura is a rare autoimmune disorder. Having ITP means that there is a shortage of platelets in your blood because the immune system destroys platelets; and that means that blood doesn’t clot properly.

ITP can be a lifelong condition you are born with but it can also be bought on by pregnancy. I didn’t feel unwell at all the whole pregnancy and after they discovered my low platelet count, my pregnancy experience changed drastically.

I had to have weekly blood tests, and visit a hematologist and obstetrician. They began me on oral steroids as normally this will boost platelet levels. After this didn’t work, they upped the steroid dose.

They also sent me for Intravenous immunoglobulin (IViG) which is a blood product designed to help your body produce platelets. This process is a slow infusion and it took 9 hours to do, so I spent a day at the hospital in the hematology clinic with an IV in my hand. Again, this didn’t work.

They kept me on steroids and did another IVIG treatment, another 8 hours, but still no response. They took me off steroids.

I was monitored each week and when I hit 37 weeks my blood test showed my levels had dropped to below 30. They should be between 150-400. As I lived in Taupo they were no longer comfortable with me being at home so I was given a days notice to pack my bags and get to Rotorua hospital. I was there one night before they decided they weren’t equipped and I was transferred to Waikato Hospital.

At Waikato I felt like a test dummy. I had a bone marrow extract as they wanted to see if I was producing platelets (that’s where they’re made). They discovered low B12 which can attribute to low production of platelets so I was given B12 injections. I had twice daily blood draws. They gave me another 8 hour IViG infusion.

Then they tried a platelet transfusion. This was the first thing that boosted my levels to around 75. This only lasted about 12 hours,  as they expected. After 10 days of tests and needles and ‘umming and ahing’ my levels dropped to 19. They suspected I wasn’t producing enough and my body was attacking and destroying what platelets I did have. I was monitored closely for any spontaneous bleeds.

I was told my labour options were limited; no water birth, no needles (so no epidural) and if I needed a c-section I would have to be put under general anesthetic because I couldn’t have the needles. They would have blood on standby should I need a transfusion. I would have to have an IV to support my adrenal glands because of the steroids I’d had.

I was 2 hours away from home, away from family. My husband was sleeping in motels and going back and forth to the hospital each day. He was missing work, and we ran out of clean clothes.

The decision was finally made to induce me at 38 weeks, 8 days after arriving, and give me a platelet transfusion. After 4 hours with the cervadil in they removed it and my labour came on. Four hours in to my labour they gave me another transfusion and four hours after that I had my baby girl. I had no major bleeds and didn’t need any blood transfusions.

A day after labour my bloods showed my platelets were rising on their own. My baby was not effected at all.

The whole experience was very confusing, emotional time for us. It was strange to feel so well yet have so many people concerned and unsure of what to do. My arms were bruised from all the blood tests, my hip from the bone marrow draw. I had so many different doctors looking after me. After she was born, they all visited us with clear relief on their faces. I understood how serious it could have been. A platelet level of 19 was one of the lowest they’d seen.

This could happen again if I become pregnant. But this time I’ll be prepared and I won’t be afraid and unsure. I just want to share this story so other people can understand this condition.