'Don't wait until you bury a child'

Tralee mother talks about the heartache and trauma of a rare blood condition that claimed her babies' lives. Noelle Robb spoke with Kerryman reporter Stephen Fernane

Tralee mother Noelle Robb (36).
Tralee mother Noelle Robb (36).

Tralee mother, Noelle Robb described her son Michael as the jewel in her crown when she gave birth to him in 2000, aged 18. There's nothing new in expressing devotion to a child except Noelle's story is one of profound heartache.

Noelle has had four beautiful babies, but only Michael survived. Noelle believes this is down to Neonatal Alloimmune Thrombocytopenia (NAIT), a disease that causes unborn or newborn babies to bleed in the brain and other major organs. NAIT develops when platelets in the pregnant mother and baby become incompatible and cannot exist together.

Noelle's first miscarriage occurred in 2010, shortly after she met her future husband, Andy - a native of Armagh. After nine weeks her worst fears were confirmed when her baby's heart stopped. Emotionally, it set Noelle and Andy back, but in 2012 - on the day she was to be married - she discovered she was five weeks pregnant. That summer, baby Ashleigh sadly died after 31 weeks, delivered four days after the devastating scan that showed she had died.

Nine months after losing her second child, Noelle was pregnant and again she and Andy dared to dream. At 35 weeks Noelle was rushed to hospital with labour pains and Noelle's hopes faded. Baby Isabella was born in February 2014 by an emergency cesarean but was rushed to the Rotunda Hospital where she was diagnosed with Neonatal Alloimmune Thrombocytopenia (NAIT). For four weeks her brave little girl stayed in hospital prior to coming home where she died in the arms of her mom on July 26, 2014.

"I just always felt I was going to miscarry in 2010. I had that intuition in me. Then when it came to Ashleigh, I remember doing up to the nursery and telling myself that 'I wasn't going to take this baby home'. Even when I had Isabella I felt that I wasn't going to be able to keep her. I've said this to my family and I don't shy away from things but I always felt something was wrong," Noelle explained.

Noelle had numerous assessments in the fetal unit and stressed each time her baby's movements didn't feel right. They scanned her and once a heartbeat was detected she was expected to go home in the knowledge that everything was fine. This is something Noelle now wants expectant mothers to be aware of.

"Once they saw a heartbeat I was expected to be assured all was okay. But I know now when you have a scan and it shows a heartbeat it means your baby is alive, not necessarily healthy. People need to know this. While pregnant with Isabella I was observed a little bit closer. She was born at 35 weeks but I was scanned at 33 weeks and I now know my daughter had a massive hemorrhage in her brain and her head size increased. This wasn't picked up."

Understandably, Noelle has struggled to cope since the loss of her babies. It's a pain she and Andy have learned to accept, but know it will never fade. Noelle admits to days when she wants to stay behind closed doors and to feeling suicidal because of panic attacks and grief.

"People say to me 'you're so brave' but every day is struggle. I have to keep going for my son and my husband. I have no other choice but to get on with it. When we brought Isabella home it was an emotional struggle, but I had to do it as she is my baby. My son Michael is my miracle and he is such a great child. I think with everything he's been through, by my side, has made him more sensitive and caring. He appreciates life. Andy's escape is the golf course and he tries to be strong for us both, but he's heartbroken and has his bad days too."

Following her ordeal, Noelle contacted a British organisation called 'Naitbabies' who gave her huge support. Through Naitbabies, Noelle learned about the condition she believes has caused her to lose her three babies, even though Isabella was the only one diagnosed with NAIT. Noelle said women have already been in touch since telling her story as they also believe they may have lost babies to NAIT.

"I knew nothing of NAIT and I wasn't diagnosed until after my fourth child. Surely I'm not the only women in Kerry or Ireland who has lost children to this condition. I was diagnosed too late and my message is not to wait until you've buried a child. It's a very simple blood test of the mom and dad. Even for couples thinking of starting a family should request the blood test. The organisation NAIT is now fighting for this screening. It's very rare but that's no reason not to take precautions as I feel my children died needlessly."