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Charlotte talks about her Kawasaki Disease journey into motherhood

My name is Charlotte. I am 32 and had Kawasaki Disease when I was about 18 months old. When my mum first realised, I was really unwell it took a while to get the medical help I needed; she thinks the doctor assumed it was a case of a first-time mum being over cautious, but thankfully she persisted until the GP agreed to a home visit. After one look at me they called an ambulance, and I was treated in hospital. I was there for 10 days and for a long time nobody had been able to successfully diagnose me. I’d had numerous tests, and a full blood transfusion but the doctors were running out of options. Fortunately, a paediatrician from Great Ormond Street Hospital was visiting and they asked him to have a look at me. He’d seen one other case in his career at this point but was able to diagnose me with Kawasaki Disease and I was treated and discharged. 

I have been so lucky not to suffer any health issues or lasting heart damage as a result of Kawasaki Disease.

After leaving hospital I was incredibly weak so had to re-learn to walk, but in terms of my heart and circulatory health, I’ve never had any problems since. A nurse once told me as a teenager I had ‘the blood pressure of an athlete’ which was great to hear as my lifestyle is decidedly unathletic, but maybe she just said that to everyone!

I’d always mention it at medical appointments just in case and was surprised at some of the times it became relevant.

In my childhood Kawasaki Disease never affected my day-to-day life, or limited me in any way, but I’d always mention it at medical appointments just in case and was surprised at some of the times it became relevant. I think the best example of this, is I went to a family planning clinic when I was 15 to get the contraceptive pill. I mentioned I’d had Kawasaki Disease as a baby in the consultation, and this actually affected which kind of pill they gave me. Some types of contraception may be more suitable than others – something I had not considered.

Later in life, when there was a slight shortage of the brand I used, the doctor made sure I was kept on it rather than switched to another type as had been done for some other patients. I don’t think I’d have necessarily made the link between a childhood disease and the contraceptive pill so was glad it had come up in conversation at the time!

I am currently pregnant with my third child and this was another area where Kawasaki Disease became relevant.

Despite having no obvious aftereffects from my childhood, with my first pregnancy the midwife decided to refer me to a consultant cardiologist at the hospital to see if I needed any specialist care. As a precaution, they decided to run a few tests, such as an ECG, to check my heart – the worry was that the additional stress on my heart and circulation around pregnancy and labour could potentially cause complications. Luckily, they didn’t find anything concerning so I was referred back to midwife-led care and successfully gave birth to my first son with no heart related complications.

With my second pregnancy, three years later, I was again referred for a consultation with cardiology, but it was decided there was no need to repeat the tests. Now with my third baby, since it has been over five years since my first round of pregnancy-related tests, the consultant suggested we do them again to be on the safe side. Although everything came back normal, this time they decided to prescribe me aspirin for the duration of pregnancy, just to reduce any risk of coronary events. Once I’ve given birth, I’ve also been offered a CT coronary angiography which will allow the doctors to see my cardiac vessels and look for any damage. I have been told that if this comes back ok, I can effectively draw a line under Kawasaki Disease, as if I hadn’t suffered any ill effects by now it was extremely unlikely any would appear at this stage, so long after my episode.

If you haven’t come across it already and you want to know more about contraception, pregnancy and childbirth, we have a whole section JUST HERE supported by leading UK Kawasaki Disease experts.