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CHAPTER 3

Sunshine and rare disease

Jenna loved to stroke and kiss my pregnant tummy. She would listen for the “baba” and ask, “When the baba coming, Mommy? What will it look like?” or “Where will the baba sleep? With me? Will it be a girl, Mommy? Can we choose a girl, Mommy?” Then she’d press her little cherub lips up against my skin and whisper loudly but in a secretive tone: “Hello? Hello, baba? It’s Jenna here. I’m Jenna,” and wave as if the little soul could see her.

Jen loved bathtime. Water, fun, toys, nursery rhymes, bubbles and the singing of songs. One of her favourite treats was when I climbed into the bath with her. These were such delicious moments. We would light candles and wallow in the warm water together, the water nymph and the pregnant hippo. It was on just such a night, seven months into my pregnancy, when we were at opposite ends of the bath, surrounded by floating plastic ducks and letters of the alphabet that Jenna watched my large tummy with fascination as the baby’s tiny foot pushed against my skin, making a little bulge. I could see a thought forming in her mind. She took a deep breath.

“Mommy,” she asked, “where will the baby come out?” Pause. She looked perplexed. “How will it get out, Mommy?”

I thought about it for a while and then decided the truth was the only option. “Out of Mommy’s vagina, Jen,” I said quietly.

She stared at me, eyes wide in total disbelief, then covered her mouth with her hands and started to giggle. Then, slowly, as it began to dawn on her that I wasn’t joking, her little face crumpled. “Owie,” she said. “Owie, Mommy.” She clambered over my tummy and up onto my chest. She wrapped her little arms around my neck and rocked me gently. It was so damned cute and honest. I hugged her baby body into mine, breathing in her scent and holding her tight. “It will be okay, my angel,” I said. “Mommy and the baby will be okay.”

A few months later, on the 27th of August 1997, Kristin Ann Lowe, a robust blonde baby girl, arrived in the world. She’d been so active for the last four months of my pregnancy, I should have known we had a firecracker on the way. After a 16-hour labour, Kristi was born close to midnight. As I leaned forward to lift her out of my womb and onto my breast, I was completely overcome by the exquisite miracle that is new life. The depth of a mother’s love has no limits. It is exponential. It grows more intense with the birth of each new child. We had a baby girl, a perfect baby girl.

Kristi was golden. Soft gold-brown eyes, soft gold hair, long but podgy baby limbs and a distinctive big, soft “squishy” mouth. From the moment she entered the world she was active and alert, with an inquisitive and adventurous spirit. She suckled almost immediately, holding onto me with one hand. She was a ray of sunshine.

We asked Stuart’s sister Alison to be godmother to Kristi. Lovingly known as the “glitter glue” that holds our family together, Ali’s energy, enthusiasm for life and positivity are infectious. Not only does she bring a sparkle to everything she does, but she constantly brings everyone together. That’s the “glue” part. It is a gift of hers to ensure everyone in the immediate and extended family is loved, acknowledged and stays in touch with one another. Ali is a ray of pure sunshine who always knows how to find the good in life. She was the right fit for our new bundle of joy.

From day one Jenna was totally taken with Kristi. She held her, cuddled her, nurtured her and played with her constantly. She was always at her side.

It didn’t take long for Stu and me to discover that Kristi was not a good sleeper, but, even so, coping with a newborn the second time round was a whole lot easier for me. I was far more relaxed and able to take everything in my stride. We did have a good giggle when, about five weeks after bringing Kristi home, Jen came through to the bedroom and asked politely, “Mommy, could we please take her back to the hospital now?” As cute as it was, it was also revealing. As much as she loved her baby sister, having to share her mom and dad was clearly an adjustment. Mostly, though, Jen would play happily with her books and toys while I breastfed or changed nappies.

Kristi was about six weeks old when I first noticed some deep red marks on her back and behind her knees. I was worried. I called Stu to come and have a look.

“What do you think this is, my love?” I asked. He took a close look.

“I’ve no idea,” he said eventually. “A bite, or a rash maybe? Or an allergy?”

I looked at him.

“I don’t know,” he admitted. “Don’t worry, but let’s check it out.”

Butterflies tickled my insides. I didn’t have a good feeling.

I took Kristi to our paediatrician the next day. His reaction wasn’t comforting.

“I’ve not seen this before, Gabi,” he told me. “To be honest, I’m not sure what this is.” He recommended a well-known dermatologist and arranged an appointment.

I was in her rooms two days later, cradling my new baby in my arms. Within moments the dermatologist was performing a biopsy and Kristi was crying from the pain. I did my best to calm her and then I sat down opposite the doctor.

“I don’t know for sure yet,” she said, looking straight at me, “but she could have juvenile xanthagranuloma or histiocytosis. Both are pretty rare, but I’m going to send this off to the lab now and I will let you know soon.”

I was side-swiped. Histio-what? Rare? What on earth was she talking about? I drove home, tears pouring down my face. What did this mean? How could she just say that straight out with no explanation? I was in shock.

I phoned Stuart. “I’m on my way home,” he said. “I’ll see you in 20.”

I managed to get Kristi and Jen down for an afternoon nap so that Stu and I could talk. We sat together, dazed, in the kitchen. And then we Googled ...

“Juvenile xanthagranuloma (JXG) is a benign histiocytosic disorder that primarily affects children under one year of age. Ocular JXG manifests in up to 10% of people with JXG and may affect their vision as the presence of JXG in the eye can cause spontaneous hyphema, secondary glaucoma or even blindness.”

What the heck?

“In medicine histiocytosis is an excessive number of histiocytes (tissue macrophages) and the term is often used to refer to a group of rare diseases which share this sign as a characteristic. Occasionally and confusingly, the term ‘histiocytosis’ is sometimes used to refer to individual diseases.”

You’ve got to be kidding me!

Waiting 48 hours for the results was unbearable. Stuart and I were shaken and confused. I was dreading how we would get through the weekend without knowing, but finally the dermatologist phoned, on Friday at 4 pm. I sat in our kitchen, shaking, as she explained that Kristi had mastocytosis urticaria pigmentosa, and we should come back to see her next week. Again, we Googled with dread …

“Mastocytosis urticaria pigmentosa is a type of mast cell disease. A rare disorder affecting both children and adults caused by the accumulation of functionally defective mast cells (also called mastocytes) and CD34+ mast cell precursors. People affected by mastocytosis are susceptible to a variety of symptoms, including itching, hives, and anaphylactic shock, caused by the release of histamine and other pro-inflammatory substances from mast cells.”

We were in a state of shock. Scared, we stayed up researching for hours and called anyone we knew with a medical background. In the days that followed my breast milk dried up from the anxiety and fear. Just about overnight I had to put Kristi on formula. I felt ashamed, but it was beyond my control.

We saw the dermatologist a few times. Kristi’s condition was very rare and in many ways we were left floundering, searching for answers and someone to help. I threw myself into learning as much about mastocytosis as I could and discovered there was a chance that Kristi could outgrow it with the onset of puberty. That was our hope.

In the meantime, we had to find ways to manage her symptoms. She was at risk of anaphylactic shock, she had flushing attacks and an allergic response would be catastrophic. If Kristi didn’t grow out of her condition, it could mean the onset of mast cell disease or mast cell leukaemia.

Looking for support, I joined the international Mastocytosis Society online, but found being part of the group very challenging. Many of the patients had more severe disease and symptoms, which was terrifying. I learned to filter the information that was relevant to Kristi. As the months passed, she developed more mastocytosis lesions all over her body. The flushing attacks were debilitating and became more regular. With no prior warning, her entire body would flush dark red and her lesions would become angry and raised. She became agitated for up to 30 minutes at a time. We worked to soothe her and mitigate whatever appeared to be inducing her attacks. Extreme heat or cold were triggers for her, as was crying. Over time I realised that if I kept her baths tepid, and ensured that she didn’t over-heat or cry, I could reduce the attacks.

The risk of allergy meant I became meticulous about introducing foods, substances, creams and fabrics into Kristi’s environment one at a time to limit the change of a negative response. Bites and stings, especially from bees, were also potentially very dangerous. Many over-the-counter medications are histamine-inducing: antiinflammatories, codeine, anaesthetic and painkillers were among the many medicines we had to avoid. Anxiety and worry were ever present. I needed to be vigilant and to remain calm, when often I felt terrified and vulnerable, and very alone.

Help came out of the blue. One day while driving I heard on my car radio a professor of paediatrics being interviewed. His medical background and expertise made my ears prick up. This could be exactly who we needed. I tracked him down through the radio station and called his office the minute I got home.

“Yes,” the receptionist said, “you are welcome to make an appointment. I have something in three months’ time?”

“Please,” I said, “just ask him if he has heard of a disease called mastocytosis?”

Perhaps she could hear the anxiety in my voice, but two minutes later Prof. Potter picked up the phone.

“Hello – Mrs Lowe?” he said to me. “Yes, I have dealt with mastocytosis before. In fact, I studied under someone in the UK who had a specific interest in it and I’ve had one or two patients through my practice with it over the years. Please come and see me this week. We will fit you in.”

The man was a godsend. Prof. Potter guided and mentored us through the risks, the options, the do’s and don’ts. He managed Kristi’s case from then on and became our go-to person. I kept a very close eye on her and maintained records of her symptoms and responses. She started on a powerful anti-histamine, which I administered if she had a flushing attack. We expended a lot of energy making sure she didn’t cry or over-heat. This made her already erratic sleeping patterns even more difficult and we got ourselves into a terrible loop, spending hours rocking her to sleep every night. Sometimes I was exhausted from the sheer effort of making sure Kristi never cried. Now, a couple of decades later, I wish my daughter could cry more freely.