Genetics: It’s All My Fault

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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 would go through 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.

My Superman, showing everyone how brave he was while waiting for his second IV…

Wrong.

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 passed that guilt? 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 strength as well. 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.

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60 thoughts on “Genetics: It’s All My Fault

  1. i totally get it. i have EDS on top of a few other things, but EDS is hereditary and it looks like my 14 year old has it too. she gets screened for it next month. even though it’s not my fault, i still have mom guilt.

  2. Kids really are amazing aren’t they!? Whatever gets thrown at them they deal with it. Keep strong xxx Thanks for linking up to #familyfun

  3. There are so many things we can’t control in this life, but we can control how we react to them. It’s so great that your son has been posiitive throughout this!

  4. Thank you so much for sharing, i’m sure it can’t be easy for your child to have a genetic condition, i’ve seen many people blame themselves when their children were born with something, a friend of mine had a baby who passed a few days after birth a few years ago, her second son was born two years ago and he was perfectly fine, her baby she had in October has been in the hospital since he was born with a rare genetic condition she didn’t even know she was a carrier & it turns how that was what her first son had. Horrible thing to watch someone go through.

  5. Ah what a brave little boy, I hope everything goes well and this will be the end of his kidney problems. Kids are surprisingly resilient and thicker skinned than we give them credit. Their nativity helps them out no doubt. Good luck with everything and thanks for joining us at #familyfun xx

  6. I think we always put the blame on ourselves as parents, but this is not your fault at all! As for gaining strength from our kids, of course we do, because we love them so much! Your boy is such a brave little boy and he seems to be coping well. His braveness is inspiring and that will help you but the surgery sounds like it’s much better than what could happen if it is left.

    We are so lucky to have such wonderful children and I will be thinking of him and your family!

    Thanks for sharing your experience and for linking up to #AnythingGoes

  7. Awwww poor baby!! He is definitely very brave little boy. Hun don’t feel bad there are so many things in life we cant control we just have to try and hope for the best. Best wishes and prayers for him.

  8. I am a paediatric renal nurse so please believe me when I say it is most definetly not your fault. Hugs to your litte one xx #DreamandSparkle

  9. My mom has battled kidney and heart disease and carries the same guilt and worry about all of us. Thankfully, we’re all fine so far! As a child, I don’t have any blame of her so don’t worry!

  10. Oh my word my heart was in my mouth reading this. It must be so hard seeing him go through such challenges, but he is so incredibly lucky to have such a loving mum, and you must be so proud of him. He’s amazing. Much love to you all and I truly wish your little hero a swift recovery. xx Thanks for sharing your story with us at #DreamTeam

  11. Oh my goodness, I’m so sorry you’re going through this, what a brave boy. You are not to blame. I hope it goes really well and he’s soon feeling much better. Thanks for being a #bigpinklinker this week.

  12. Bless you what a lot to have to go through. Your son sounds so brave and of course nothing you could have done. He’s got a loving, supportive family so is very lucky really. Sending lots of luck and best wishes and thanks for sharing with #bestandworst x

  13. First, I will say a prayer for you and your son. Second, I’m sorry that you and your family are going through this but I’m so glad to hear that your son is staying strong and courageous.

  14. I just can’t even imagine how scary this is. You’re right, the strength that our children possess and what they teach us is mind blowing! I have a friend whose son has the same prognosis, I should direct her to your blog.

  15. What a very touching post, Im sorry your family had to go through all that ….So nice that he can see the bright side, he sounds like an amazing child! Thanks for sharing

  16. Sorry you had to go through all of this and I can see how much it has affected your heart. I love seeing how children can bring out the inspiration in adults. They are wonderful with reminding us what is important…

  17. He is definitely a brave little soul. I know that there are so many things that can be passed by genetics that we just don’t even think of.

  18. Thanks for sharing this amazing story. There is so much we can’t control with our kids, genetics included. This was a great way to put a positive spin on a not so fun situation.

  19. So sorry your son has to go through this. I have some health issues that I hope won’t be passed on to my kids too. It is scary and hard to be so out of control.

  20. Thank you for your heartfelt post. We have no control over somethings, genetics is on of them. My daughter was going to donate her eggs and they found she is a CF carrier. We have no known relatives with CF on either side. you just never know. My heart will stay with you and your son!

  21. That’s one thing I don’t think any parents think about when they plan for a baby, or get pregnant. I think they only thought that really crosses anyones mind at that point is….my husband has twins in his family or I have twins in mine…wonder if we are next. Not that well, my cousin is down syndrome, etc….What a great thought provoking story.

  22. It is good to tell your story. I am sure that others are feeling like you, and it is good to know that others have experienced similar situations. I have to say, though, I am not sure you can take blame for all the things that may go wrong for your child. For example, I had breast cancer 7 years ago. My mom’s genes had nothing to do with it. I also have several autoimmune issue. Nope, this was just how my body responded to the world. Consider this, ok?

  23. Hopefully he also inherited yours smarts, wit and bravery.:) Even as a stepparent, who only carries the guilt that I’ll somehow still mess them up despite no genetic connection, this is a very relatable story!

  24. This story was really touching. I don’t think you shouldn’t blame yourself and he loves you no matter what. He is a trooper just like his mama.

  25. Look at him, he’s so brave!!! Isn’t it amazing how resilient they are? Just blows my mind. I have pretty shitty genetics and have already passed down my fair share to the kids and it breaks my heart. (Ironically enough, I have kidney issues, too!) Just remember, it’s not your fault…it’s always someone elses. 😉 Probably a great, great, great something or other…but not you.

    You and your son are amazing. Thanks for sharing this! #anythinggoes

  26. What a brave little man and it’s not your fault at all. You handled it so well and you both deserve some happiness after all of this.

  27. wow, your little man is a brave trooper! dont beat yourself up, it sounds like it could be partially your husbands genes also 😉
    Unfortunately, we all have faults that could be passed on. Its all about teaching them how to cope with it I suppose? #bigpinklink

  28. Hi Brandi, as parents we have enough on our plate without shouldering the burden of guilt. And through experience I have learned that children are far hardier than we give them credit for, although that will never stop us worrying.

    My son has a whole ‘package’ of issues, some are obviously in the family (my side), some not and it has been an enlightening journey and there have been times I would have done anything to change places with my son

    I hope surgery goes well for your little one and that there are no further health issues for him.

    xx

  29. Its amazing how genetics plays a roll in our families.

    Do you watch Little People Big World? We were talking the other night because the son (who is a little person) is having a baby with his wife and we were talking about what the likihood of him having a little person child would be. In that instance it’s pretty easy to figure out from what I remember from high school biology. If his wife doesn’t have the gene then they have a 50-50 chance to have a little person child or not. If she does have the gene it turns it into a more complicated situation.

    In my own family I worry about my kids having bad teeth. Definitely not as life-changing as a kidney issue, but bad teeth have plagued me and my mother for years and it looks to be that my daughter already has traces of it at age 6. On the good side it makes me feel better that it’s genetic and not my skills as a mother to get my kids to brush their teeth, but on the other hand I know the expense that will come in the future from having such a bad draw because of her genetics.

    Thanks so much for writing this and giving my brain something to mull over while I did the dishes today. Might not seem like much, but it was a good way to spend my morning!

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