Saturday 29 April 2017

'We have decided to give up our dream of having a baby' - Irish woman (36) who lost three babies to NAIT

After losing three babies, mother Noelle Robb believes more needs to be done to raise awareness of NAIT

Noelle Robb (36) from Co Kerry lost three babies to Neonatal Alloimmune Thrombocytopenia (NAIT). Photo By : Domnick Walsh
Noelle Robb (36) from Co Kerry lost three babies to Neonatal Alloimmune Thrombocytopenia (NAIT). Photo By : Domnick Walsh

Kathy Donaghy

Noelle Robb sailed through her first pregnancy. She was 18-years-old and it never occurred to her that pregnancy was something you ever worried about. Her son Michael was born in the summer of 2000 and while Noelle says early motherhood wasn't a walk in the park for someone so young, she settled into her life as a new mum raising Michael.

Eight years later in the spring of 2009 Noelle, who lives in Tralee, met her future husband Andy from Co Armagh and fell head over heels in love. The couple were anxious to start a family together and Noelle got pregnant straight away. But at 12 weeks Noelle had a miscarriage - the baby's heart had stopped beating at nine weeks - leaving her and Andy devastated.

"I remember people saying to me 'it happens every day' like it was nothing. I know what I went through and it's not nothing," says Noelle.

She went back to work as an admin assistant after a few weeks and tried to focus on planning her wedding to Andy. They had set the date for February 23 2012. On the day of her wedding Noelle was five weeks pregnant and she couldn't have been happier.

However Noelle never felt well in herself during the pregnancy; she always had the feeling something was wrong. She made numerous trips to the fetal assessment unit in Tralee General Hospital as she felt the baby's movements were not what they should have been.

"They would scan me and they would say 'there's the heart beat'. I just knew something was wrong," she says.

Her worst fears were confirmed in the summer of 2012 when Noelle found out that her baby had died. She delivered baby Ashleigh four days after a scan showed there was no heartbeat. She was 31 weeks pregnant.

"At the time I couldn't believe it was happening. It was so shocking. I remember the labour was beautiful; I enjoyed it very much. There was no time during the labour I said to myself that I was delivering a dead baby. She was my baby - at the time I didn't know if I was having a boy or a girl. This was my baby, she was very much wanted and I felt honoured to deliver her. I was so thankful to Asheligh to be able to deliver her and I remember feeling if this is the only thing I can do for her, I will do it," says Noelle.

Ashleigh was born at 7.30 am on August 23. While Noelle remembers being frightened at the thought of seeing her baby, she held her in her arms and says she was beautiful. But it was also hugely upsetting because Ashleigh was bleeding from her eyes, her nose and her mouth and she was badly bruised. In the hospital ward as they spent time with their daughter, Andy and Noelle could hear the cries of other new babies and decided to take their baby home as quickly as possible. She was buried the following day.

A post mortem was carried out. There were no answers and Noelle found herself completely at sea and unable to cope. "I blamed myself a lot. I was overweight at the time of the pregnancy and I was asking myself 'did I crush her'? I started having panic attacks and I was convinced I was going to die. I had no answers. I felt there should have been more of an investigation into why she died. I couldn't understand why she was bleeding so much and why she was bruised so badly," says Noelle.

Feeling afraid yet desperate for another baby, Noelle and Andy felt they had to give pregnancy another go. Noelle says she was determined to be as fit and healthy as possible so she embarked on a weight loss regime. She lost weight and felt more confident in herself. In June 2013 she found out she was pregnant, nine months after losing Ashleigh. Noelle had been kept going by the hopes of another pregnancy.

This time the pregnancy seemed to be going well. Noelle remembers feeling more movements. "Because it was so long since I'd had Michael I had forgotten what movements were meant to be like and I couldn't really judge from Ashleigh's. They felt a bit stronger but I was still waiting for the big kick," says Noelle.

Coming close to her due date Noelle couldn't escape the feeling that something wasn't right. At 35 weeks she went to hospital with signs of labour. A trace was put on her to monitor the baby's heartbeat. The medical staff were anxious although at the time Noelle says she just couldn't have believed something could happen this baby. "We were going to bring this baby home and rear her. That was it," says Noelle.

On February 12 2014 baby Isabella was born by emergency caesarean section. While events seem blurry looking back, Noelle recalls how her baby was whipped away to the intensive care unit. "At the time there was a massive storm raging and I felt the storm outside was like the storm inside my head".

The following day Isabella was sent to the Rotunda Hospital. The prognosis from specialist doctors was not good. Isabella's brain was badly damaged - she would not live long. She was diagnosed with Neonatal Alloimmune Thrombocytopenia (NAIT), which can cause unborn or newborn babies to bleed into the brain and other major organs. NAIT occurs when the mother's immune response is to attack her own baby's blood platelets because of an incompatibility between the mother's and the father's platelet antigens.

For four weeks Isabella stayed in the hospital. With help from the Jack and Jill foundation, which helps parents to care for severely brain damaged children at home, Noelle and Andy brought Isabella home. She had hydrocephalus, cerebral palsy, epilepsy and she was deaf and blind. The couple were taught how to administer her drugs and how to feed her through a tube. They knew she wasn't going to survive; that it was palliative care only but they still hoped for a miracle.

"She was suffering so much - we knew then there'd be no miracle. If she had lived, she would have had no quality of life. Isabella passed away in my arms at home on the 26th July 2014," says Noelle.

Following her death, Noelle made contact with an organisation in Britain called Naitbabies. With its support she learned a lot about the condition she now believes has caused her to lose her other two babies although Isabella was the only one diagnosed with NAIT.

Noelle believes that more needs to be done to raise awareness of NAIT and she also believes if she had been tested after her miscarriage, the outcomes for her subsequent pregnancies could have been different. She also believes that if women have suffered recurrent miscarriage and have no answers, they should seek a test for NAIT. According to Stacy Corke, one of the founders of Naitbabies in Britain, they would like to see all pregnant woman screened through a blood test. Corke explains that understanding of NAIT and research in the area is still growing and the organisation is campaigning for a better understanding of the condition particularly in the medical profession.

After 24 years since she lost her second child to NAIT, Corke says there's still no guidelines on how best to treat NAIT in pregnancy and that some doctors differ when it comes to treatment. She says the usual treatment is regular immunoglobulin transfusions in pregnancy sometimes accompanied by steroids.

"With correct treatment options we see a 95pc success rate in pregnancies, even in families where there's been a previous loss," says Corke.

Women are not routinely screened for NAIT here and according to Professor Louise Kenny, Consultant Obstetrician and Gynaecologist at Cork University Maternity Hospital, it's generally when a woman has a pregnancy that is affected that the condition is picked up.

Noelle says she and her husband Andy have reached the end of the road in terms of trying for a baby together. They are simply terrified of losing another baby. For now she is simply taking things one day at a time. Some days, she says, are better than others.

"I'm trying to maintain my mental health. At the moment I'm taking every day as it comes. We have decided to give up our dream of having another baby. It took us a long time to make that decision. The trauma and fear is too real. There is treatment but what if it didn't work?

"We have to accept that we are not going to have a baby together," says Noelle.

She says Andy has been fantastic throughout all their hardships. "He goes to work and he looks after Michael and I. He doesn't cry in front of me. A couple of weeks ago we were going through things in a wardrobe and we found Isabella's changing bag. He was very upset.

"I am grateful every day for him and for Michael. He's my miracle and he's a great boy. I'm trying to focus now on keeping going and being well and healthy. I want to be able to look forward to things again. I'd love to be able to go back to work at some time in the future," says Noelle.

* For further information, see www.naitbabies.org.

* INM has a dedicated section independent.ie/babyloss where parents of all ages can share their stories of miscarriage, stillbirth and neonatal death. The section will serve as a testament to the women and men who share their stories, a memorial for the babies lost and as a resource for other people who have gone through or are going through the experience.

Your stories can be anonymous or on the record and nothing will be published in any format without prior consultation with you. If you would like to be part of this and tell your story, email Yvonne Hogan at yhogan@independent.ie

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