Never thought I would have anything in common with Ulrika

I want to keep this to refer to, so I know I am not on my own. I've also been reading India Knight's blog about her daughter who has had to have major heart surgery. It doesn't make very pleasant reading but it is a reality I will soon have to face so it is a comfort to know about other parents who have faced the challenges of a baby having heart surgery and it can help me work towards some preparation of what to expect in hospital.



Bo and Ulrika Jonsson
My darling daughter Bo has just turned two and a half and with every glance that I throw her, without exception, I count my blessings and my luck. She invariably throws me back an awkward look filled with questions such as ‘Why are you looking at me? Or, why do you keep staring at me?’. And the truth is, I cannot stop staring at her, because it wasn’t that long ago when I thought there wouldn’t actually be a little Bo in my life.
Questions and answers The experience of having a child with a serious heart defect has been enlightening but it has also changed me profoundly. To be told at my 20 week scan that my baby had an abnormal heart was a shock. To be told after my subsequent referral that there was a chromosomal defect, which meant ‘the foetus’ would not even be ‘compatible with life’, was without doubt the greatest shock I have ever had. Grandparents had died, even my own father, but this news came out of a clear blue sky, like a twister whipping up everything in its path and throwing it back down again with an unbeatable force. Never for one moment, in the midst of all the havoc it caused, did I think ‘Why me?’. What I did think was ‘How can this be possible, when my baby has been kicking away so happily inside me?’. I simply couldn’t understand.
My body and mind switched to auto-pilot and I went about my business like a zombie, surrounded by health professionals who continued to refer to my baby as ‘the foetus’. There seemed to be a sense of urgency about the whole case and I was hurried to consider a CVS to eliminate the chromosomal link. My ‘foetus’, I was told had its hands ‘in flexion’ and its knees where knocking together. Terminology such as ‘Edward’s Syndrome’ and ‘Triosome 18’ hung heavy in an air of fear. I felt shunned and disassociated.
It was a long two-week wait for the results of the test. Unbearable. For me and all my family – and what to tell my darling, healthy six year old who waited so eagerly for mummy’s swollen tummy to become something a little more interesting? Finally the news came. My baby had no chromosomal defect – she, and yes, it was definitely a she, ONLY had a heart defect.
What now? I was going to have a baby with a broken heart. A child who would require surgery, medicine, hospital visits, a limited life and God knows what else? Was I destined now to become a woman who would campaign tirelessly for undernourished charities and would never know normal life ever again? Would I be spending my life locked indoors for fear of taking my child out? Would we never again know holidays? Laughter? Fun and creativity? Would I be locked in depression and fear forever? My fears were real and overwhelming. And there appeared to be no answers.
And then came my first ray of light. It came in the form of my referral to Guy’s Hospital’s and its gentle, personable Dr Guerleen Sharland. The second ray of light was her colleague Dr Shak Qureshi. Despite the fact that what they brought me was further complicated information it felt like stepping into a warm house after having been left standing outside in the cold for a long, long time. On hand was a counsellor who made me feel it was ok to cry and my baby was finally referred to as a ‘baby’. I felt I had come home at last.
Despite the complicated procedures they were forced to relay to me, there was optimism in their voices and kind smiles offering reassurance, but no guarantees. And that is how I ended up at Guy’s. That was just under three years ago now.
Bo has had two surgeries there (one open heart) all under the careful hand of the brilliant David Anderson and she still requires a third. It’s been a long old schlep. She’s had infections in her scar, bronchilitis, sickness and diahorrea etc, etc over these past couple of years. I have battled with my fear of her and her condition; my fear of me; my fear of others; my fear of the future and my fear of the present. But somehow I’ve been lifted. Lifted by the people around me. Most of whom I do not even know.
Before too long I received letters from members of the public who themselves were fellow mums of cardiac babies – parents and grandparents, sisters, brothers or people who had no cardiac babies but just bundles of empathy. Each and every letter made me weep with hope and sometimes with the sadness of the stories. And some letters I have yet to reply to. Then, with every hospital visit I noticed there were other parents singing the same nursery rhymes as me at their children’s bedside pre- or post-surgery. Parents and relations I had never known, but with whom I would be intrinsically linked forever, because we somehow shared the same story. I met kind nurses who understood; doctors who would listen, but were sometimes not too great at taking blood samples; and consultants who went about their business kindly as if it was just another day at the office.
I saw how cardiac defects crossed all boundaries. The posh people in the corner were no different from those who could barely afford the fare into hospital. We would all sit together by our children’s side in between dashing back to the fantastic Ronald McDonald’s house for a few hours kip. We never needed any introduction. Sometimes no words at all - an incredible understanding and sympathy and comfort passed between us. And then upon my returns from hospital, there on my door mat shone another ray of light. The ‘ECHO’. I read story after story after story. Some were outrageously similar to mine and I would stand in my kitchen and nod, or weep or smile.
So this is life. Not the life I anticipated and feared 3 years ago. But a life full of love and support; joy and laughter. I deal with Bo’s heart condition in my head on a daily basis. Sometimes when she is particularly perky it is hard to imagine she will ever need further surgery – but I know, of course, that day will come. I fear it tremendously, but have learnt to enjoy the moments I have with her and I’ve learnt something I never thought I would – to treat her like a normal child.
My Bo and our future She has such spirit. She’s stubborn, wilful, a madam, fussy, temperamental and at the best of times she thinks she’s the Queen of England. We tip-toe around her for fear of annoying her, but not for fear of breaking her. I admire her fight and spirit. I feel she will need it throughout her life and particularly during the periods she will spend in hospital. When she has a temperature, as recently as last week, I panic more than I would with my son. My head goes in a spin and I picture horrendous consequences and then I have to give myself a good slap and remember that my worrying will do her no good. I have been blessed with two wonderful children. One healthy and one not so. Both bring me fantastic qualities and I wouldn’t want to change my time with either of them at all. The possibility of a termination with Bo was unthinkable and I’m glad. It’s been unbearably hard at times. At times I have wanted to give up. But then I’m forced to go on for her sake and her brother’s and for the sake of all the other people who have gone on going on.
A third child? I don’t know. I’m supposed to stand a 1 in 50 chance of having another cardiac baby. My pregnancy with Bo was thoroughly miserable. It was punctuated by scans, test and intervention. I hated it - there was so little joy. And whilst something inside me tells me I couldn’t do it all over again – there is something inside me which tells me that perhaps next time it wouldn’t be as bad. Maybe next time things could go right. Maybe something inside me would like me to see if I can do it the right way this time. Although, I have had minor protestations from my son, on whom the Bo experience made a significant impression. He says: “Mum, I think you’re great with two kids”. So who knows? Ulrika Jonsson