OUR NAIT STORY
Hiya my name is Lindsay and I have 3 children, aged 11, 10 and 8 months, Byron, Lewis and Elicia. My youngest 2 were affected by NAIT.
If like me you have been affected by NAIT or are going through the treatment at the moment then you will find the uttermost support and best advice from these sites and my thoughts and well wishes are with you and your family!
11 years ago I had my first baby boy, who was perfectly healthy, no problems at all. A few months after I discovered I was expecting my second baby boy in July 2001, my mum sadly lost her battle with cancer. Four numb weeks passed by and I gave birth to my 2nd boy, Lewis, who was 7lb 11oz and just a day early, he looked a little blue when he was born but the midwives said it was fine.
For the first time in a long while I felt I had something to smile about and actually felt an emotion again – love. He was born at 7:30pm; we enjoyed a lovely night together in the hospital. Waking for feeds and cuddles, and gently patting his back to help get Lewis’ wind up.
Later in the morning after waiting for the midwife, we went to give Lewis a bath. After the midwife removed Lewis’s clothes and placed him in the bath, she noticed that Lewis had bruising, small purple spots covered all over his back. Astonishingly she turned to me and said “what have you done to him?!” Absolutely gob smacked I stood there and said nothing! The midwife dressed Lewis and the doctor was called.
The curtains were drawn and the doctor examined Lewis. I overheard the doctor saying it’s very strange and she’d never seen it before. I was petrified; going over and over everything I’d done with Lewis the evening before, during the night and morning…and couldn’t think of anything…
A few hours later I was able to go and see my poorly little boy, he had a needle in his hand and they were both all swollen and bruised, where the doctors had tried to get a needle in. The feeling of numbness washed over me again. The tube from the needle was attached to a big syringe containing white stuff, not knowing what it was at the time, I presumed they had discovered what was wrong with my little boy and I felt relieved. Not just because they knew how to fix him but because I knew I hadn’t done anything to hurt him.
Not really understanding anything that the doctors said I kept going over everything that I could have done during my pregnancy to cause it. I was reassured that I hadn’t done anything and that what had happened is very rare. At the time the doctor said that only 3 cases in the country had been reported, and what my baby needed, that there were only a very few people to donate it in the country and the supply was very low. We had been told that Lewis had abdominal bleeding and also bleeding in the brain. His count was 5,000. I didn’t understand any of it, I didn’t even know its proper name, after my mum recently passing away, the only thing I cared about was that Lewis was getting better and would be home soon.
Lewis had 2 full weeks of transfusions of platelets. Towards the end of the 2 weeks they had to transfuse via Lewis’s head as the doctors couldn’t access any other veins.
At Lewis’s discharge doctors told me future pregnancies should be treated with injections every week and that I should inform the doctors straight away because my first had a very low chance of being affected, Lewis had a 50% chance of being affected, but any other pregnancies would be 100% affected.
Everything carried on healthily and fine for 9 years and then I discovered I was pregnant again, this time doing it all on my own. I went to the doctors told him about Lewis’ illness. The GP said that it would get dealt with when I first saw the midwife. A few weeks later I went to see the midwife, she referred me for my first 12 week scan and told me to inform the doctor of any worries that I had after my 12 week scan.
My 12 week scan came and the doctor was oblivious to my concerns and acted as though I was making a mountain out of a mole hill! But the doctor said she would make a referral…
Our second scan at 20 weeks came and still I had no news of my referral, I made the midwife make enquiries and was told someone would get in touch with me. At this point this is when I had started to research what was wrong with Lewis and found out its real name Neonatal Alloimmune Thrombocytopenia! And finally found Naitbabies and then contacts on facebook, who helped me through one of the worst and scariest times of my life, I can never thank Louise or Stacy enough!
Four weeks later!! I received a phone call at work, it was Saint Mary’s Hospital in Manchester, I was told to attend the next day. When I got there I was informed that my referrals had been sent to nearly every hospital in the district, that nobody knew where the referral was supposed to go! Or who it was supposed to go to!
The following week I finally started my IVIG treatment every week at Saint Mary’s Hospital under Dr Bulmer’s care. Sometimes I was there for 15 hours! Not because my 7 bottles took that long but because the staff were very busy! But still very lovely at the same time. The first bottle took an hour and half, to slow the onset of side effects and the rest of the bottles took an hour each. Because of all the reassurance of the treatment I expected my pregnancy to last at least as near to 38 weeks as possible! I was so sure of the treatment.
At 31 weeks I was due a pubs test, I’d had the steroids the week just before in case anything bad happened to the baby’s lungs. Dr Bulmer carried out the pubs test to find out my baby girls platelet count. I remember him saying that he expected the count to be above 50, but if it is anything lower, which is also a possibility, then he would have to transfuse in the womb. It was all very scary, there were about 7 different people in the room, doctors, midwifes, technicians who tested the sample to get the count as soon as possible.
After being very still for 15 minutes whilst the doctor inserted the needle – luckily the placenta was at the front, and watching my baby girl on screen, nearly going for the needle which was now right next to my baby. I remember the technician calling out the count – 25!!!, my eyes filled with tears, my stomach did a summersault and my heart raced a 1000 beats a milli second, my poor little girl. The treatment wasn’t working as well as expected. Dr Bulmer transfused my baby girl there and then. They took a new sample and it went to over 70,000. These platelets would only last a week.
The next 7 days were terrifying. I was too scared to move or walk too fast for fear of hurting my baby and causing her to bleed. But I had to carry on as normal with my usual day to day activities, in constant fear!
I was due for the pubs test again. But there was a problem with the donor’s platelets; they had found something in the blood! (Sorry but I cannot remember what it was! Bad I know, but most of this is now a blur) the donor was no longer allowed to donate blood or platelets. This only left a few people in the UK able to donate the specific platelets needed – HPA3. One person had donated only the week before so the hospital had to contact the other donor, as an emergency, to donate for that day. Whilst I was receiving my IVIG I was also waiting for the platelets to be brought up by motorbike from London! It was all very stressful and frustrating but I was trying to keep calm as well for the sake of my baby girl.
Finally 6 hours later the platelets arrived and we were back in the room with all the professionals. Again I waited for the count to be called, after they’d taken the sample, I was lying still on the bed with the needle inserted into my belly next to my baby. The technician called the count…5!!! The silent sound of shock and gasps filled the room, again I tried with all my might to keep it cool and stay calm for the sake of my baby girl. The doctor transfused and took a sample again – it was well over higher than it should be. This would get her through the next week.
Back on the ward in my room I had the heartbeat monitor strapped to me whilst still receiving the last few bottles of my IVIG. Listening to my baby’s heartbeat at the usual 140, her heart beat suddenly dropped to 60! This happened again and again! Every time the nurses rushed in and the gas mask (for the baby to receive more oxygen) put on my face and I was rolled onto my side. They transferred me to the labour ward.
Around 11pm the doctors decided to get my baby out by c-section, because although her heart rate had steadied, they didn’t like the teeth marks it was making on the paper of the heart rate monitor, the doctors stated that they did not know the pattern of a baby’s heart rate before it stops completely, so rather than wish they’d of done something, the doctors wanted her out.
Baby Elicia was born 18th June 2011 at 00:26. 8 weeks early. Elicia’s count was still good from the transfusion, and stayed good; she never needed any more transfusions. Her heart rate stabilised, and she had no bleeds whatsoever.
Elicia was taken straight away and I never got to see her until 2pm the next day. 14 hours after she had been cut out of me. I felt so cheated and hurt and just wanted to hold my baby, but soo relieved she was okay.
Elicia stayed in hospital for 4 weeks. Not because of her NAIT but because of her prematurity. She came home on the 17th July 2011. I don’t think I will ever be able to put myself or another baby through the treatment again. She is, just like Lewis, and every other NAIT baby, a miracle and a true blessing.
I thank God every single day for their wellbeing and existence.
Thank you for reading our NAIT experience.
The CRAWFORD family.