On the morning of Friday 12th June (Day 13 on this journey), Freya threw us another curveball. I awoke to a strange noise and found her gasping for breath. She looked like she was drowning. Her nasal passages were blocked, but she kept closing her mouth and when she couldn’t catch a breath she wouldn’t open her mouth and was gasping for air. She had to have a saline nebuliser that morning, and again I felt like we had taken a few steps backwards. She had an x-ray in her room that morning; her 4th chest x-ray so far.
At 8am that morning I wrote:
“This isn’t fair, none of it is. I’ve had enough little one, had enough of seeing you poorly, of watching you go through test after test and for what? They are not making you better!”
I didn’t write any more after that morning because the events that unfolded that day didn’t allow me the time, and I didn’t have the heart to put pen to paper. I was lost.
Saturday 13th June 2015, 08:45am
“Well, what a day we had yesterday. A day that whilst filled with angst and emotional turmoil, may have just marked the beginning of your recovery in earnest. They’ve found it! After days of tests and numerous medical professionals scratching their heads, they reached a diagnosis. You have a rare autoimmune condition called Kawasaki’s Disease. It was a relief to finally get there, but as the information poured in and the extent of the illness became clearer we realised this wasn’t going to be an easy ride. I had hoped with all my heart that they would find an infection that could be treated with antibiotics. That they would up the dose, and we would go home. Unfortunately that wasn’t to be.
Remember I told you on Thursday that the Rheumatology Consultant had been to see you? I told you that he had asked for more tests, including another ‘echo’ heart scan. Well you had that scan yesterday morning…The scan identified dilated arteries in your heart, and that my sweetheart was the final piece of the puzzle. The Consultant came to see me and told me that you needed immediate treatment. You were to be given two doses of Immunoglobulin. Basically, it is a collection of antibodies from lots of different people’s blood – an army of special forces designed to go into your body and wipe the nasties out, along with your silly blood cells that decided to embark on a bit of friendly fire. Our immune system is an amazing thing. Our blood cells are always on the look out for things that shouldn’t be there, so when a virus turns up uninvited, your body sends the white blood cells in to send it packing. In your case though, it would appear that something…triggered an autoimmune reaction, and instead of attacking the virus, your white blood cells started attacking the healthy cells in your body.
The symptoms you presented as a result of this internal battle (prolonged fever, rash, dry lips) are collectively known as Kawasaki’s Disease. It is a very rare condition, affecting only 8 in 100,000 people. And although it is more common in children under 5 years old, there have been few babies as little as you with this condition. The Doctors have had lot of conversations with specialists in Newcastle and Great Ormond Street Hospital in London to decide your treatment. So it is 2 doses of Immunoglobulin…aspirin to protect your heart, and steroids to suppress your immune system while all this is going on.
I broke down yesterday and with each new detail I was given I began to unravel a little at a time. So much to take in, and so much pressure. No treatment is without risks and we found ourselves making decisions about drugs with possible side effects, or non-treatment with potential long-term effects. The steroids may affect your normal development. I guess if you are reading this now we will know if that was the case or not. I was scared about that, but the doctors strongly advised the treatment so we had to trust them to get you better. We won’t know yet if there has been any permanent damage to your internal organs, particularly your heart. Daily ‘echo’ heart scans over the next few days, weeks, months, will show us that. I hope we can mend your broken heart and I am so sorry that I couldn’t protect you from this my darling.
I would be lying to you if I didn’t admit that I looked for all sorts of reasons to blame myself. Did I not look after myself enough during pregnancy? I should have taken more vitamins, I should have breast-fed you for longer. Today, I have to accept that this was no-one else’s fault…This just happened…I’m going to have to try really hard not to wrap you up in cotton wool for the rest of your life, and I don’t doubt there will be a few wasted trips to A&E over the course of the coming months and years.
I am struggling to come to terms with this whole thing if I am honest. To think that 13 days ago I took you to the doctor with nothing but a high temperature…”
That evening I remember trying to settle Freya when a woman entered our room, announcing that she was the surgical consultant on duty. She needed me to give consent to a PICC line for Freya. Basically, they were concerned about the longevity of the cannulas in Freya’s body and wanted to provide longer-term access. I was anxious about my daughter having to be subjected to further surgical procedures that would require a general anaesthetic. I will never forget how matter-of-fact the doctor was as she received my signature from my left hand, as my right hand was busy soothing my screaming child.
A few hours later, 2 doctors came to our room to say that they needed to take a blood sample as an earlier sample had shown something concerning that they wanted to check. The female doctor asked me if it was ok to take blood from a vein in Freya’s left arm. It was midnight and I had not long since managed to finally settle my baby to sleep. The pressure of the day got to me, and I screamed at the doctor, “What are you asking me for? If you want to take it from there, take it!! You’ve done nothing but take her blood every day, so take it! Take it all!” The poor doctors didn’t know what hit them, and they slowly backed out of our room. The nurse began to move Freya and I started to worry that because of my emotional outburst they were taking her away from me. The nurse told me that the doctors wanted to take Freya’s blood in the Treatment Room. I really thought they were going to take her away and have me committed under the Mental Health Act until the nurse asked me if I wanted to go with them. I wanted to stay in our room and cry. Instead, I brushed myself off and went to the Treatment Room and held my child whilst they took more blood.
Freya underwent an echocardiogram daily over the weekend, and each day showed that there had been no change, for better or worse. I felt like I understood the illness, and how it was affecting Freya’s body, but I had seriously underestimated Kawasaki’s Disease.