I remember with my first child when the nurse asked us an hours worth of questions about our genetic history. Was there down syndrome in the family? How about cancer or blood disorders? I was initially somewhat terrified.
This was the first moment that I realized just how responsible I was for everything this child would go through, whether I could control it or not, their health and happiness was riding on my parenting as well as my genes.This was the first moment that I realized just how responsible I was for everything this child… Click To Tweet
Luckily my husband and I both have rather hearty genetics. My only health issue is living with one kidney, which people do easily everyday, so not really a big deal.
So I thought.
With my third child, my 20 week ultrasound found that one of his kidneys wasn’t functioning well, his heart had excess fluid around it, and his risk for down syndrome had increased to a chance of 1/300.
I cried for days. I had no control over what was happening to the child I had not yet met but already loved so dearly. I have never felt so helpless. My initial desire to know if I was having a boy or girl was replaced with fear that my baby would be unhealthy.
Luckily, he was born perfectly normal aside from one kidney being a bit of a bother. Our pediatric urologist was wonderful, doing all tests that were necessary but trying to do everything to keep him from surgery or invasive tests if possible.
We went through a renal ultrasound; a test requiring an IV and catheter when he was just six weeks old. Having to hold your child down, your baby who has learned to trust you and only you in the cold world they were so recently thrust into, while someone causes them pain, is one of the hardest things I have ever done.
Watching his tiny body lie strapped to a white table for picture after picture of his little kidneys, was the next hardest.
After a barrage of tests during his first six months, just before we were expecting to schedule surgery, a miracle occurred, the reflux that was found to be causing the kidney damage, suddenly ceased. Our doctor called it a miracle, having never seen such a sever case reverse so suddenly.
I was so relieved! No surgery! No guilt for the excess pain my genetics would cause!
The doctor determined that yearly ultrasounds and careful at home monitoring of any symptoms of infection would suffice for his treatment plan. Yes! Ultrasounds I can handle!
However, just before his 5th birthday this year, my son’s kidney decided it no longer wanted to be a part of his functioning little body.
I was left reeling once again. Following his ultrasound a year ago, everything looked so good that we were hopeful this would be his final year of monitoring. No more worrying! No more testing or doctors visits.
We were sent through a new battering of tests, much more difficult with a just turned 6 year old than an infant. IV’s aren’t fun for anyone, but for a kid who already hates needles, it was the worst thing in the world.
I was forced to hold him down again, this time seeing the fear in his eyes as he knew what was coming. I felt like I was betraying him, like he would never trust me again as I forced him to hold still while a nurse shoved an IV in his hand, failed, and switched to his arm.
I wanted to throw the IV across the room, grab my baby and run to the nearest ice cream shop where we would live happily, healthily ever after.
But I knew he needed this test. We had to find out what was wrong inside my boy.
The results revealed that his kidney had failed completely. The bottom 2/3rds was slowly filling with fluid and was unable to drain while the top part did absolutely nothing but provide the thin stream of urine that was causing all the trouble.
He was at risk for septic infection, pain as the kidney ballooned and put pressure on his other organs, and excessive vomiting.
Our doctor scheduled surgery for as soon as he was able and we began the waiting game again. A game filled with guilt and fear.
I did this to him. My genes have caused him pain and us non stop worry. How does a parent get passed that guilt?I did this to him. My genes have caused him pain and us non stop worry. How does a parent get… Click To Tweet
I am lucky to have a very large support system as we head down this path, but mostly I get through the guilt when I look at my son. My 6 year old is so brave. He is Superman to me.
Being so young, he doesn’t really understand what is coming, though his older brother has revealed more than I would have chosen to tell him. Yet he smiles in the face of impending surgery and looks forward to a few days of video game playing and popsicles.
He always sees the bright side. And that is the beauty and strength of children. It gives me strength as well.My son always sees the bright side. And that is the beauty and strength of children. It gives me… Click To Tweet
Funny that a grown woman would need to gather strength from a small child, but I find that I learn more from my children than I ever learned in school.
I have also learned that my husband’s aunt had to have a kidney removed at age 7….So maybe it’s not ALL my fault.