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I have twin girls diagnosed with ARPKD

It all started with a few small cysts on Twin B (Alicia) found at 33 weeks gestation.
The girls made an early arrival at 35 weeks and 5 days and were very health and strong only spending 6 days in ICU estabishing feeding. A scan at 6 weeks confirmed the cysts were growing on Alicia and we were referred to a renal team at a childrens hospital and begain our wait while Amelia seemed to be in the clear. At 7mths old we rushed to hospital with fevers and a very irritable baby. Alicia had her first UTI which had gone septic.

After 7 days in hospital we finally came home on an oral medication to finish fighting the UTI we also came home on Capotril to maintain blood pressure which was higher than the average adults without medication. Things settled for a few weeks at 8mths we were back in hospital with twin sister Amelia displaying similar symptoms as her sister such as abdominal discomfort and irritability.

We then found her blood pressure was up and upon a ultrasound found the cysts had started to form on both her kidneys. Amelias name joined Alicias on the wait list for treatment with the renal team as well as being on a higher dose of capotril. Each month the girls had BP checks and medication adjusted. Over a 4mth period Alicia suffered from 3 UTIs and soon began taking Bactrim to prevent further UTIs from occurring.

The first appointment came about a month later and Alicia underwent some blood tests for genetic testing to confirm our suspicions.

Being 2020 and from QLD genetic testing took time to come back as we were mid lock down and boarders closed but genetic testing for blood takes place in VIC. By their 1st bithday we had a diagnosis and both girls have ARPKD. With a follow up scan it shows the girls have cysts on both kidneys and Amelias have spread to the liver too. We also found that Capotril was causing both girls insomnia which can be a side effect with both girls only sleeping 8-10hrs in a 24hr period. So at 14mth the girls changed medication to Amlodipine.

This medication came with some challange too as the girls ajusted to the medication they suffered one of the more common side effects of dizziness. Being toddlers just learning to walk this took its toll on the girls and myself as i was 8mth pregnant at this point too. The girls are now 18mth. There medication and BP is stable at this point and there new little sister seems to be in the clear at this stage with follow up scans every 3mth until she turns 1 to be sure.

The girls next appointment is in April. Besides the pronounced tummies and the medication at home both girls are happy and health and attend the childcare centre I work at 5 days a week. We know we have a long way to go and that the future is unknown but we are in this together and going to take it one day at a time.



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