West Yorkshire, England, UK
Our NAIT story started in January 2007 with the birth of our first baby.
‘Blooming’ was not a word I could associate with the pregnancy and I would go as far as to say it was really quite miserable!!! After months of migraines and abnormal blood results I was finally induced at 37 weeks and that’s when the nightmare really did begin………..
Otto was born covered in bruises and blood tests confirmed he had dangerously low platelets (8k). Otto was transferred to the NICU and received IVIG while waiting for platelets to arrive for his transfusion. We stayed at the hospital with him and on his third day they delivered the awful news that Otto had suffered from 2 ICH’s and was diagnosed with cerebral palsy. Otto’s platelet counts rose with the initial transfusion however with each further check of the counts they were dropping daily. A further transfusion was given after another week. We anxiously waited and thankfully after another week (just before the counts were again at transfusion level) they suddenly started increasing. That was finally our ticket home with the baby we had longed for. We arrived home on a cold January evening at around 10pm and I will never forget the way I felt not knowing what was in store for our precious little boy. For a long time we watched and waited for every milestone and have constantly worried about what the future held. Seeing Otto grow into a beautiful loving child has been utterly amazing and as we watched him develop we decided that we desperately wanted siblings for him. What happened next was another blessing.
NAIT had been identified with Otto within the first few days of his arrival when the hematologist at the hospital took blood from my husband and I. We were in the 50% group for it to reoccur and after a consultation at the Fetal Medicine department of the LGI we found treatment was available. We knew then that we certainly did want to try for another baby.
When Otto was 8 months old I became pregnant, and as advised, I waited until I was 15 weeks before having the amniocentesis to discover if our second baby had been affected. On the same day as the amnio I started IVIG as a precaution and a week later (on Christmas eve 2007) after almost a full day of receiving my second round of IVIG the results came to say our baby would not need treatment!! The relief was immense and I can honestly say this time I definitely bloomed!! 5 more uneventful months passed and in June 2008 our baby girl Tove was born.
We had always hoped for a big family but once NAIT became a part of it things were not so straight forward anymore. We would spend the next 2 years agonizing over a third baby. We might be lucky and discover the baby wasn’t affected. If the baby did need treatment then I had tolerated the 2 lots of IVIG in my second pregnancy and so it should hopefully be quite straightforward! Still I was scared to try for another child. The broody feeling would not go away and as I tried to come to terms with not having another baby it only got stronger and by Autumn 2010 I would soon find out what a treated pregnancy would be like. I had my amnio in the New Year and we prayed for the baby to be unaffected but this was not to be…. weeks of IVIG lay ahead and the decisions that went with it were nearly impossible.
It took on average 15 hours every Saturday to complete the infusion of drugs and often this resulted in an overnight stay at the hospital. Scans showed the baby was growing well and nothing of any concern was identified. At 30 weeks we were really struggling to hold it together without knowing if the treatment was working or if the counts were dropping and so opted for the fetal blood sampling. The results were shocking. The baby had counts of only 16k and so received a platelet transfusion immediately. Our treatment plan changed and I was to have the IVIG twice weekly alongside steroids until delivery at 32 weeks instead of 34. 2 days later our baby had other ideas. After some braxton hicks like tightening pains and the baby going very quiet I ended up back in the hospital for monitoring. Within an hour or so of arriving for reassurance I was having an emergency caesarean section and meeting our 3rd baby at 30 weeks + 6 days (My due date was for August 2011 and our baby was delivered in May)!!!!! Our baby had a count of 66k and received another transfusion as there was no way of knowing which way the counts would go. After 4 days in the intensive care at the LGI we were transferred to our local hospital where she progressed through the high dependency unit to special care and then finally the nursery. 5 weeks after her sudden arrival we were going home! All the stress, strain and worry evaporated within moments and our baby was where she belonged.
I can safely say our family is complete but without the support of the wonderful friends I found online I could not have made this journey. I have three amazing children and will do whatever I can to raise awareness of this cruel condition to make changes for the future.
Please help us by supporting naitbabies.org
Otto Tove & Tippi xx