Not many people like to say their worst fears out loud. I guess I’m different. For some people voicing their fears can give those fears validation that is not welcome. Some worry about being judged by their words. Some are too concerned with what they should say and not what they feel. We all have our own ways of handling our issues. For me it can be destructive to keep my thoughts in my head; kept in there they play over and over like a stuck record and my old friend ‘Ant’ makes them her friend (for those of you who haven’t read my earlier bluemama posts, let me introduce you to Ant (Automatic Negative Thoughts)).
When I started blogging, I made a decision to be completely candid about whatever I was feeling, be it light or dark. For me that is the only way I can really even try to help others who may suffer similar feelings or worries; to help those people who might not want to say it out loud realise that they are not alone.
I said in my last blog that the most cruel thing about Kawasaki Disease is the unknown. We don’t know what causes KD. There are a number of theories, from carpet cleaner to soy, and a strong opinion that it is a combination of environmental and genetic factors with a viral trigger thrown in for good measure. Because no-one knows the cause, no-one can create a test and as a result many cases go undiagnosed or receive a late diagnosis like Freya. Whilst it is rare for KD to reoccur, there are no guarantees that it won’t. We are unsure how long Freya will continue to display the symptoms, what other health issues she may encounter throughout her life, or whether her little heart is strong enough to repair itself.
I guess it’s time to share with you the worst day of my life. Thursday 18th June. Day 19.
Thursday 18th June, 07:30am
“I could tell you that during your time in hospital I never left your side, but that wouldn’t be true. Sometimes your Auntie would come to visit and take me somewhere for tea to make sure I was eating a proper meal…And last night I decided that the best thing for me was a good night’s sleep.
I left you on the HDU ward at about 10:30pm last night. I changed your nappy, fed you and gave you your medicine and left you in the care of the nurses. I trust them to do a fantastic job of looking after you, but it still didn’t feel right walking away.
…I had a full 8 hours sleep and do I feel better? No, I feel even more tired than I did before, and to add to that I feel wholly wretched for leaving you…I arrived at the ward only to be sent away because the nurses were doing their handover. So now I am sat in the parent room…writing in this journal, with no idea if you are awake or asleep, happy or sad, well or unwell.
Today is a big day – new drugs. If everything goes according to plan we could be home by the weekend. But this rollercoaster journey has taught me not to look too far ahead for the good stuff because we only end up disappointed.”
That day Freya received an infusion of a drug called Infliximab. We had to give our consent for it to be given to Freya as it is not a human product; it is made from the antibodies of mice. At around 4pm I received a message from a friend, “How did Freya tolerate the new mouse IV?!?!” to which I replied “She’s very chilled. One might say as quiet as a mouse!!!” It took a number of hours to infuse, and Freya was closely monitored for a number of hours after for any signs of her body rejecting the drug. Just like everything else on our journey, Freya took it in her stride, and it was considered a success.
In the afternoon, Freya’s Cardiology Consultant came personally to perform an echocardiogram. The Rheumatology Consultant had kept his promise, and the Cardiologist was very informative, explaining everything that she could see on the screen. She showed me the normal sections of Freya’s coronary arteries, and the bulges (the aneurisms), the largest of which was 5.2mm in diameter. To put that in perspective, Freya’s heart would have been about the size of her fist or a large walnut. The coronary arteries in a healthy baby’s heart are approximately 1mm in diameter. Freya’s arteries were the size of a teenagers. The consultant asked me if I understood the risks involved with Freya’s heart condition. I said that I thought I did, that I understood that her blood needed to be kept thin so it would continue to flow freely through her arteries and not swirl and clot in the aneurism to prevent a heart attack. I then said that I felt like Freya was a ticking time bomb. I remember looking right into the Consultant’s eyes, waiting for her to give me a smile and tell me that I was over-reacting and that Freya’s situation wasn’t that serious. She didn’t. Instead she said “Let’s go somewhere private and talk shall we?”
My heart was beating out of my chest as she led me to a room down the corridor from the HDU. We went in and sat down; the consultant, our nurse and me.
Friday 19th June 2015, 07:38am
“Yesterday I left you with a note about thinking positively. What irony there is in that as I write this morning. On Tuesday we were brought to [the hospital] to see specialists in cardiology. Their job is to fix hearts, but instead they broke mine when they told me they can’t fix yours. Can’t.
I didn’t update the journal yesterday even though it was an eventful afternoon and there was lots to tell you. But I couldn’t face telling you. It seems that in all of this ‘excitement’ and all the knowledge that I have picked up along this journey, I appear to have suppressed the bit about the risk of a coronary aneurism rupturing. That’s a pretty big deal. And it could happen to you. And they’ve told me that there is nothing they can do about it now, and there will be nothing they can do about it if it happens. So that’s that then. Seems I was right about you being a ticking time bomb sweetie pie. And right now I am really not sure how I am supposed to deal with that little nugget of information.
I have never been so scared of anything in my whole life, and I will never feel this scared again. Losing you would be unimaginable. My heart is already broken at the very thought of it.”
I will never be able to forget that day. When we were all sat down, the doctor began to talk. She reiterated what she had already said about the risks when we were out on the ward. She said that one risk was that if the blood was able to swirl around within the bulge, it could cause a clot which would result in a heart attack. That is why Freya would be taking aspirin for life. She told me that there is a risk that if the aneurism begins to repair itself, it can become too narrow which would also cause a heart attack. That is why Freya would have regular monitoring, ECG and echo scans to keep an eye on things. Then she told me of the third risk. She said, “There is a risk that the aneurism could rupture. There is nothing we can do to prevent that from happening, and I’m sorry to tell you that if it does happen, there will be absolutely nothing that we can do.” Those words will never leave me. I immediately broke down. I thought I’d cried before, but I literally sobbed so hard I could hardly breathe. The doctor continued to talk, but I couldn’t tell you what she was saying because all I could hear were the words that will haunt me for the rest of my life. Both the nurse and the doctor eventually fell silent and all that could be heard were my cries. I think deep down I already knew. I’d referred to her as a ticking time bomb on a number of occasions, and no-one had corrected me. But I’m a neghead aren’t I?! I’m the one who always looks on the negative side and should think more positively. They were supposed to tell me to get a grip, that I was being a drama queen. They weren’t supposed to tell me that this disease could take my daughter away from us.
Eventually I composed myself and felt that I just needed to get back to Freya, so I left the doctor and headed back to the HDU with the nurse. I can picture the scene as if I were watching a silent movie. I turned the corner into the room intent on picking my baby girl up in my arms and never letting her go. Except when I rounded the corner and saw her I couldn’t bear it, and I backed away and ran for the door. The nurse followed me and I fell into her arms. I didn’t know how I was ever going to embrace my little girl again, knowing that she could be taken from me. I talked for a while longer with the nurse, and after some time returned to the ward. The parents of the other 3 babies on the ward were with their children, so the nurses closed the curtains around Freya’s bed.
That evening I cried and cried, and I emotionally distanced myself from Freya. I dreaded feeding time, using the fact that she was attached to the monitors as an excuse for not picking her up. I felt like I had to stop myself from loving her any more than I already did. We were sharing the HDU with 3 others; 2 babies and a 7-year old boy who had all undergone heart surgery. I felt like we were frauds; that it was unnecessary for Freya to be in a high dependency unit and that she was taking the nurses time away from those more severe cases. That morning I had cried with the nurses about the fact that I felt we were in the way, that we were using up valuable bed space for more serious cases than Freya’s. The nurse said Freya wouldn’t be in the HDU unless it was considered necessary, and I sneered that they would if they didn’t have a bed for her anywhere else. That night I cried bitter, angry tears. I could not believe that earlier that day I had felt we were a burden, that Freya wasn’t as sick as the other babies on that ward. I suddenly felt angry at the other babies. They were being fixed, but they wouldn’t fix mine.
I could leave it there, but I don’t want to leave you with the fear that I had on that day. A lot has happened since then, I have a much better understanding of Freya’s heart condition now, and there has been some improvement since that day. Freya is currently what her consultant describes as “nice and stable”. The build up to her follow-up appointments causes me huge anxiety that manifests itself in shouting at the kids or nagging at my husband. It also awakens the fears that I try to suppress on a day to day basis. I feel physically sick as I climb the stairs when I go to check on Freya whilst she is sleeping. I am always afraid of what I might find. People have asked me if I sleep ok. I sleep perfectly well. It’s waking that I am most afraid of, too scared to open my eyes sometimes. The relief I feel when I hear her move or breathe is intense.
My husband and I thought long and hard about what we should or shouldn’t share about Freya’s condition. We didn’t want our children to find out things we’ve decided not to tell them. We didn’t want Freya herself to be told before we have told her what she needs to know. We didn’t want to be judged by people who might see us doing things with Freya that they think we ought not to be. And we didn’t want pity. I don’t want people to look at Freya with sadness. There is a strong chance she will beat this thing; she is after all our miracle. She is a beautiful girl with a lovely temperament. She sleeps through the night, and wakes up smiling. It is impossible to stay sad for long in her presence – a less content baby would have made this journey all the more difficult. She has softened every blow with her bright blue eyes and cheeky smile. My love for her is overwhelming and I will forever be in awe of her. Sometimes when I’m holding her and she is smiling up at me, a sadness seeps into my consciousness as I contemplate a world without her in it. But I bat it away because although it is true that the day her heart broke mine did too, she doesn’t need a mummy who is sad all the time. She needs me strong, smiling and by her side. Always.