January 26 is Kawasaki Disease Awareness Day, and this one hits close to home for our family.
With ongoing efforts from her medical team at BC Children’s Hospital and the support of family and our amazing community, our little angel made it through her battle!
-And so did we –
This is her story:
Natali’s long battle to a Kawasaki Disease (KD) Diagnosis
In February 2009, at just 4 months old, our daughter Natali Wisekal was diagnosed with Kawasaki Disease (KD).
The 1st week
Natali’s symptoms began the night of Saturday January 24, 2009. My very quiet, easy going baby spent the whole night crying and screaming inconsolably for no apparent reason. I tried everything I knew to calm her to no avail. After a long, exhausting night, I didn’t actually recognize a “problem” until the following afternoon.
It was a Sunday. I remember this day because we had her aunt and uncle come for a visit. The visit went fairly well and after they left I took Natali for a diaper change. That’s when I noticed a strange rash all over her tummy. My first assumption was a reaction to aunties perfume – I was quite sensitive as a child. A bath and a few hours went by and the rash was still there, and now – 4 hours later she began her fever of 103 – 104!
Before KD, I was pretty laid back about illness – so I gave her Tylenol to keep her fever down to 101 – 102.
We made an appointment with our family Dr that week and I got “the look” – you know the one – the look given to the over paranoid first time parent who is making something out of nothing!
Sunday February 1st we took her to the ER for yet another dismissal – “Her rash and fever are the result of some virus she’s fighting, just keep doing what you’re doing and she’ll be fine”. Despite the order I insisted of her symptoms they also said “her fever was due to a virus she’s fighting and her rash was the release of her fever – basically a heat rash”.
Weeks went by and she was long passed those initial symptoms of her fever and rash, and was now projectile vomiting all over the place! She would nurse constantly and would spit up more then I even realized she could be taking in! She would scream at pain in her legs (we could tell by her behaviour and response to touch). This new “symptom” was also dismissed.
We brought her into our Dr and the ER numerous times because something was NOT right. My very easy going happy, sleep through the night from birth, never crying, rarely spitting up, perfect baby would just sleep, eat, puke and scream. I was told she was just “going through a phase” and the vomiting was cause of “overeating“.
Week 5 – Finally getting treated
Finally on Thursday February 26, we were having a big brunch talking about what our next step was. Clearly our local physicians weren’t any help and there was without a doubt something wrong with our daughter! That’s when we looked down at the floor to find Natali’s left hand and forearm appearing a tinge of purple / blue.
We dropped everything and rushed her back to the ER – this time they couldn’t turn us away! They admitted her into the local hospital for her hand. As they monitored her throughout the day, they noticed she had a heart murmur. But at the same time, her heart had another problem. they weren’t sure exactly what was wrong. (We found out later on, that the entire backside of her heart was non functioning)
She had high white blood cell counts and very low oxygen levels in her blood. She also had no blood pressure readings throughout the entire left side of her body.
We didn’t know then, but the Dr. handling here at our home hospital didn’t expect she’d ever be coming home.
Natal and I were air-vac’d out that night at 2am to Vancouver BC Children’s Hospital. They said we would be there for at least two weeks and hopefully she’d be out of the PICU tomorrow.
They put her on a number of different drugs to try and thin her blood – help prevent blood clots, also to slow down her immune system because it was now attacking itself.
On Saturday they started a new medication typically used for people with chronic diseases.
Most Dr.’s don’t even know about Kawasaki Disease and in Natali’s case, she was diagnosed as atypical – This means she didn’t fit the full set of known symptoms at any one Dr. visit. It is crucial to survival and recovery to receive an early diagnosis – within the first 10 days from initial onset of symptoms.
Natali did not receive this due to the lack of awareness for Kawasaki Disease. Learn more about KD
February 28 (36 days)
Natali was finally diagnosed as having atypical Kawasaki Disease.
The complete diagnoses for Natali is:
1.) Kawasaki syndrome
2.) Sequelae of Kawasaki syndrome
…a) occlusion of right coronary artery with marked aneursmal formations and multiple stenoses of LAD and circumflex artery
…b) Localized regional wall motion abnormality at the posterior base of left ventricle
…c) Multiple aneurysmal and stenoses of the central arterial vasculature specifically the origin of the left axillary artery left renal artery and secular aneurysm at mid abdominal aorta and right femoral artery
3.) Severe distal ischemia to digits of the left hand
4.) Persistent inflammation and tissue healing at the palm of the left hand.
The above is the diagnoses written by our leading Cardiologist overseeing Natali.
Natali was given a course of IVIG and was headed onto recovery….
Her Life Struggling Recovery
March 1 (update)
Another 3 weeks stay was expected.
Found out that morning that this is something that is going to stay with her forever.
She had severe inflammation of her coronary arteries, that as they heal and go back to regular size will leave aneurysms. (‘bubble like’ areas still within them where blood will just swirl) At some unknown point – it could be a year, 10yrs, or 20yrs – down the road she will need heart surgery to fix them.
Also she will be on anticoagulant medication for the rest of her life.
Natali finally went off her oxygen that morning, and was no longer relying on IV’s.
She has become significantly stronger over her time there, and her feedings were back to normal. She would soon be leaving ICU!
March 3 (update)
Natali was all smiles this day – even a couple laughs!
She’d been a lot stronger than she was when we had gone in. And she was becoming very curious about everything again!
Now they were just monitoring her chest, breathing by herself again and not needing much from the IV anymore – she was no longer constantly hooked up to anything.
Her left hand is doing a bit better. It’s still quite swollen but most of the colour is back. Though her thumb and 3 following fingers from the nail onward were still quite black, and the nails appeared as though they were dyeing. It was expect she would most likely loose those tips.
March 5 (update)
On this day we were ‘schooled’ in how to draw and give a needle properly. We started giving both her morning and night shot of enoxaparin, in preparation of eventually going home.
Today they took some pictures of her hand to put in add to the study that they are doing on Kawasaki Disease. The disease is quite rare so they’re still doing documentation with how it works with Natali.
They’re supposed to be scheduling her for an MRI and MRA to see how her vessels are improving and check for anymore clots.
March 6 (update)
They had just started to try something new on Natali’s left hand to try and open the vessels better to help the blood flow easier. They are using a paste called Nitro-bid/paste, designed to cause more blood flow to the area.
March 7 (update)
Early this morning Natali got an echo done as she was crying from 4:30am to 7am this morning and they needed to ensure that she wasn’t having chest or other pain.
Natali hadn’t been peeing very much in the last 24hrs. And her Blood pressure went up at one point to 180 / 90 which is a high normal for babies! They are thinking there may be a problem developing in her kidneys.
Natali got her first heart catheter operation today to inject medication from the inside right to the clots to help break some of them up.
They showed us the picture of the artery going to her left hand. You can see the artery leading up to roughly where her shoulder starts, and then there’s a big gap where you don’t see anything whatsoever until around her elbow. This is a large blood clot which they went in and dug with a wire then inserted an anticoagulant medication directly into in an attempt to try and help break up the clot and return proper circulation.
After the heart cath. her hemoglobin was quite low so she was placed in ICU and given a blood transfusion.
March 9 (update)
Natali had an MRI on Monday to be sure there weren’t any clots in her brain – There were none! 🙂
Her hand was doing much better after the cath-op. The tips were still black, but the rest of her hand wasn’t nearly as sensitive anymore. She was opening it, AND, she even had a PULSE!!
March 10 (update)
At 10pm they started her on another blood thinner, one typically only used in adults – an extremely low dose of Plavix. I thought the blood thinners were starting to work, as her morning injection continued to re-bleed all day.
Unfortunately she was at a real high risk of bleeding from pretty well anywhere. Just the night before she had thrown up real hard and had flakes of dry blood all through it. A few hours later she started to bleed from somewhere in her mouth just by random.
March 16 (update)
We were down in ICU while they administer a new medication.
Her monitor was reading too many “V. Tech’s”, which they described basically as she’s having mini strokes.
They placed her on a “black box” to closer monitor her heart changes.
March 18 (update)
Another trip to ICU where they had started her on yet another new medication. This was to help the “mini strokes” issue.
We were estimated to be in the hospital for at least another month and a half at this point.
Recap to this point
Our daughter was diagnosed one month ago – at 4 months of age. Since then they had found at least 15 aneurysms and she’s also likely to lose her thumb and following three fingers on her left hand.They said they had never seen a case as severe as hers.
She had been going through numerous amounts of treatment, but they still didn’t know what was working.
A referenced explanation from her doctors – “if we were to describe what phase of the disease she was in using cancer stages as an example – it would be the third (final) stage of treatment.”
March 20 – A little light to our daughters ordeal
Natali was the reason another baby got their early diagnosis
Caught by the team of doctors who had been treating and following Natali’s case, a baby who ended up in the emergency room of our hospital was thought to be on “day 3” based on Natali’s course of symptoms, and her team was able to diagnosis that little one right away.
Friday March 27 – Natali is discharged!
We had a few appointment checkups for the Monday and Thursday with rheumatology & cardiology. But we were finally able to fly home and maintain her care there until her next heart-cath scheduled for April 27.
Natali was slowly weened off of all her medications (17 over the full course of treatment) over the next year and a half except for Aspirin which she will take the rest of her life.
She has been followed up on yearly through outpatient cardiology appointments using Echocardiograms and ECG’s. In 2017 (at 8 years old) she had her first stress test and is doing extremely well!