Gillian and Scott Magee
England, UK.

Archie and Essie’s NAIT story

My husband and I were delighted to be expecting our first child, due 2nd June 2009. Routine scans at 12 and 20 weeks showed our perfect baby, healthy, wriggling and growing well. We set about decorating the nursery, and purchasing items for our expectant arrival. Like most new parents, this was a time of hope, new beginnings, and excitement at the prospect of starting a family.

I enjoyed my pregnancy, and other than the usual morning sickness, I felt very well. At 29 weeks I attended a routine midwife appointment. I raised concerns that I felt my bump had not grown as much as I would have expected it to. The midwife measured me and reassured me that all was well, and said that I was probably just going to have a small baby. I also said that I didn’t feel my baby had been moving as much as I would have expected. As I laid on the bed the midwife listened in to my baby’s heartbeat. As she did so, my baby gave a huge kick, and again, she reassured me that all was well. I presumed I was just being overly anxious, and continued the next few weeks of my pregnancy without concern.

Due to staff illnesses at the GP surgery, and bad weather, my following midwife appointment was cancelled twice. I didn’t manage to get another appointment until 35 weeks of pregnancy. The day of my appointment was 27th April 2009. A day that is etched in my memory forever. The day my world changed.

I had dropped my husband off at work, and was driving to my midwife appointment, when I was involved in a serious car accident. A van driver didn’t see me and drove at speed into the driver’s side of my car. I lost control and smashed into another car on my passenger side. The double impact spun my car, it left the road and landed on a grass verge. I recall screaming, hitting my head, and the airbags inflating. I saw smoke inside the car, and I got out as fast as I could. The next hour was a blur of paramedics and police, confusion and chaos. I was in a state of shock, and then panic set in. My unborn baby. I could not feel any movement.

I was admitted to the maternity unit at the local hospital. The physical pain started to radiate through my body. I was administered strong pain relief. I was placed in a side room and hooked up to a CTG (cardiotocography) machine to monitor my baby. I had begun to feel small movements again. My baby’s heartbeat was monitored and was steady. Over the course of the day, various midwives came in and examined the CTG results. Comments were made about my baby seeming ‘sleepy.’ I was told to drink glasses of cold water to try and wake my baby up. To lie in different positions… I overheard a doctor telling a nurse that my baby was only measuring at 28 weeks. I was told I would be sent for an ultrasound scan later that day to check on my baby’s growth. Due to ‘communication errors,’ I was not sent down for the scan and had to wait until the following day.

 My husband and I finally went for the ultrasound scan at 11am the next day. As I lay on the bed, I watched the radiographer’s face as she focused at my baby on the screen. She said nothing, but her face said everything. Something was seriously wrong. She left the room and the next person to enter was a consultant. She carried out another ultrasound scan. I struggled to process the words she was saying. My mind was in free fall. Brain. Bleed. Carry full term. Emergency caesarean. The consultant was thinking out loud. She was trying to decide what to do with my baby. My dying baby. I screamed at her to get my baby out. I could not contemplate carrying a baby that was dying for another hour, let alone several weeks.

 I left the ultrasound room in my husband’s arms, as he led me back to the ward. A chaplain came to visit us. I presumed she’d been sent because our baby was dying. She said she was just doing a routine ward visit and asked why we were crying. As I told her, she held my hand and told me that God only gives special children to special parents.

Hours passed by. I was finally taken down to theater to prepare for an emergency C-section. I was given steroid shots to help my baby’s lungs develop. I signed a disclaimer. I waited. I was numb. At 5pm, Archie was born, weighing 3lb 11oz. I glanced at his perfect face for the briefest moment before he was taken away from me. I didn’t know if I would see him alive again.

While I was in recovery, my husband went to visit Archie in the NICU (neonatal intensive care unit). Once I was stabilised and in a side room, he brought me a photograph of Archie that had been taken by a nurse. I spent the rest of the day and night gazing at this photograph of my beautiful boy. I was given a muslin cloth that had been next to Archie, to stimulate my milk. I inhaled the smell of my precious newborn boy and longed to hold him.

Late into the night, I was finally allowed to see Archie. My husband took me down to NICU in a wheelchair, where I entered the most frightening room I had ever seen. It was dark. Machines were bleeping and flashing. Wires connected them to incubators, housing tiny premature babies. And there I saw my son. Lying on his tummy, he looked so small and fragile. Wires were tangled around his tiny limbs and led to a machine that bleeped intermittently. I felt scared and helpless. At last, a neonatal nurse delicately lifted him out of his incubator, and placed him in my arms. He was perfect. He was breathing. There was hope.

The following morning, my husband and I were summoned by the consultant. This was it. This was the moment we would be told Archie’s fate. A nurse escorted us through the hospital, in silence, to a room labelled ‘Quiet Room.’ The consultant was waiting for us. Very calmly and seriously, she told us that Archie had suffered severe damage to his brain. She said she could not give us a prognosis, but that it was unlikely he would ever walk or talk. My world collapsed. I cried, wailed and screamed. Surely it wasn’t fair to keep him alive? The consultant quietly told us that as he was breathing on his own, there was nothing she could do. And then she left the room.

Alone in that room, time fell away. Hours later, my husband and I found the courage to leave those four walls and face our future… the unknown.

Over the next few days, I learnt about NAIT. Archie had been born with black eyes, his skin covered in bruises, and with a platelet count of only 9k. A normal human platelet count is 150-450k. A mismatch between mine and my husband’s blood meant my body had produced antibodies against Archie’s platelets and destroyed them. He needed a platelet transfusion immediately after birth. Matched platelets were ‘blue-lighted’ by ambulance from another hospital and transfused. But he needed more. His platelet count would go up, and then drop. More platelets. Immunoglobulins. Platelet count up. And then drop. More platelets. Immunoglobulins. Up. Drop. This continued for two weeks. Until finally, Archie’s platelet count held. Then it started to go up on it’s own. Archie was making his own platelets! The risk of further bleeding was gone.

The days took on a new routine of expressing milk, visiting Archie in NICU, learning how to feed him, first through a feeding tube, then by breast, changing his little micro nappies, bathing him, dressing him in tiny, doll-sized clothes…. The once scary NICU room became my home, the place I felt safe. The place I got to know my boy.

He was a fighter. He had spirit. He cried a lot! His little legs would push up against the base of the incubator as if he was trying to get out. His tiny fingers would pull off the eye mask he had to wear while he was being treated for jaundice. I lived minute to minute, hour to hour. I lived for progress. When he took an extra ml of feed. When he spent a minute less under the bilirubin blanket. I lived for the cuddles. The skin to skin contact. He was still covered in wires, but I became more confident handling him. I did as much of his care as I could. I spent a whole month beside his incubator, holding his tiny fingers, watching him breathe, willing him to get well enough to go home.

I struggled with my own health whilst in hospital. I sunk into a deep depression. I blamed myself for the bleed on Archie’s brain. I couldn’t eat. I couldn’t sleep. I cried for hours upon hours. My body ached. I had debilitating headaches. Headaches so fierce that I could not move my head from the pillow. Doctors said it was stress. I knew it wasn’t. Finally, an anesthetist diagnosed Post Dural Puncture. Spinal fluid had leaked during my epidural, altering the pressure around my brain. I was put on morphine. It worked instantly to block the physical pain. Perhaps helpfully, it also blocked the emotional pain.

Exactly a month after the car accident, 27th May 2009, the day of the UEFA champion’s league final, I took Archie home. As I left the hospital and walked through the city, carrying my son, I was a different person. I felt fragile and empty. The hospital staff had supported me, held me together, and kept me safe for the last month. Now it was just me, my husband and Archie.

Back at home, as the initial flurry of visitors subsided and my husband returned to work, the days passed by. Archie and I, getting to know each other, learning together, growing together. Almost 9 years on, we are still learning together. Every day seems to present a new challenge. A new opportunity for growth. Every year he seems to get diagnosed with something new. But labels mean nothing. He is my beautiful boy and I wouldn’t change him for the world.

I discovered the charity Naitbabies when Archie was a year old. I read stories like mine, and met other parents who had experienced NAIT. Some had lost babies. Some had given birth to babies that had bleeds, like Archie. Many had gone on to have successful, treated pregnancies. It gave me hope. Hope that one day I may get to experience the journey that so many other people take for granted. The opportunity to have a healthy child.

When Archie was three, I became pregnant again. I was referred to a specialist at a different hospital who had experience of treating NAIT. The pregnancy was classed as high risk and, for us, there was a 50% chance that this baby would also have NAIT. Amniocentesis was carried out at 15 weeks and confirmed that my daughter also had the condition. Treatment had already begun at 12 weeks, due to the high risk of bleeding into the brain. It consisted of weekly hospital stays receiving up to 12 hours of transfusions of immunoglobulins. Bottles and bottles of ‘liquid gold’ flowed through my veins, trying to prevent my body from attacking my daughter’s platelets.

Fortnightly ultrasound scans checked her brain for bleeds. Steroid treatment was added from 20 weeks to further suppress my immune system. C-section was scheduled for exactly 34 weeks of pregnancy.

At my 28 week ultrasound scan, just before Christmas, I got the news I’d been dreading. The consultant said she could see something on my daughter’s brain that didn’t look normal. She wanted me to return the following day for a more detailed MRI scan. I rang my husband in pieces. I don’t know how we got through the next 24 hours. The wait was excruciating. My mind tortured me. How severe was this bleed? How disabled would my daughter be? How would I cope with two disabled children? Would it be better if I terminated the pregnancy? Why had I put myself and my family through this pain again?

The following morning, I had the MRI scan. As soon as it was over, the consultant called my husband and I to his computer to look at the images. My daughter’s brain was perfect. I could breathe again.

Finally, on the 31st January 2013, Essie was born, weighing 4lb 13oz. The atmosphere in theater was calm and serene. Classical music was playing throughout the birth. I’d had a scan that morning, so I knew she had no bleeds. Her platelet count was 84k. Not as high as I’d have hoped, but not low enough to require treatment. I hemorrhaged for hours after surgery, and was minutes from going back into theater when the bleeding began to subside. I spent a long time in recovery but I didn’t care. My daughter was well and that was all that mattered. Essie spent time in NICU to ensure her platelets stabilized. They bounced up to normal levels quickly, and after 8 days I brought her home to complete our family.

Everything seemed so easy with Essie. She slept well. She fed well. She was calm. She achieved all her milestones at the expected times. I grieved each time, as I realised just how different it had been with Archie. Now I take nothing for granted. I treasure every moment with each of my children, because I know how fortunate I am to have them both in my life.

Gillian