It all started at my 32 week scan when the sonographer mentioned that one of our unborn son’s kidneys didn’t look quite right. At this stage, I wasn’t too concerned, “there’s plenty of people living with one kidney” I thought. My Obstetrician called me the next day saying to come in and see her and from that phone call I knew we were going to be heading to King Edward Hospital. So, after a few ultrasounds and steroid injections to help develop his lungs, the decision was made to get him out so he could have the best chance at life.
My husband and I were warned there was a chance that he may not survive delivery. As soon as they got him out, he started to cry and it was then I knew he was going to have the will to live. Kai was moved to the special care nursery where all sorts of monitors were hooked up to him, an IV line, a nasal gastric tube and he was also having bloods drawn 3 times a day (to monitor kidney function). An ultrasound was performed on his kidneys to see what was wrong which showed that they were a lot smaller than normal and instead of being made up of normal tissue they were made up of cysts. The Renal Team from PMH met with us and said all they could do is monitor his kidneys and hope that they would have enough function to be able to support him. If they did not, unfortunately there was nothing they could do, as he was far too small for dialysis. Sadly, babies that are born with this type of kidney disease generally do not survive very long after birth. Kai has beaten the odds so far, although inevitably he will need a transplant.
After 7 weeks we were allowed to come home, with a truckload of medications and special formula. Kai started off having weekly blood tests which have now stretched out to monthly. He has daily medications and also a weekly injection to stop him from becoming aneamic which my husband and I give to him.
It is stressful being a kidney parent.
I am always anxious after a blood test expecting that dreaded phone call to say his function is on the decline, making sure he is always hydrated and he is kept cool (kidney function is affected by heat and dehydration amongst other things) and panic when he has the slightest temp. So far he is doing well enough just to stay away from dialysis. When he reaches 10kg and if his kidneys have completely failed, I am hoping to give him one of mine. It won’t be a cure but will give him some quality of life until it fails and he needs another one, sadly donor kidneys don’t last forever.
Such a big miracle in such a little boy, I will love you always and forever my little Kai.
For more information regarding children and adults living with chronic kidney disease, or to make donation to this charity, please visit Kidney Health Australia.