Some people dream of having kids from a young age; they know how many children they want and plan their pregnancies accordingly. Others may become pregnant unexpectedly or may choose an independent lifestyle with no children. Then there are people whose lives and health lead them down a path where childbearing isn’t possible or maybe just isn’t meant to be. I fall into the latter category and I’m at peace with this because it is ok to be different and not conform to a standard.
The usual evolution in life is to get married, buy a house and start a family. My husband and I purchased our first home several months ago. On our first evening in our house, we introduced ourselves to the neighbors across the street. They are a retired couple and one of the first questions we were asked by the wife was, “Do you have children?” Noah and I responded that we did not and several minutes later into our conversation, she said, “So, you don’t have any kids.” I chuckled to myself, thinking, ‘No, our answer did not change from several minutes ago and no, we did not have kids in that short timeframe.’ She looked so perplexed by the fact that we do not have children.
While this may be a personal topic for some, I am as comfortable sharing my thoughts on having children as I am about sharing my entire health journey. In February 2013, I wrote about our thoughts on having kids in a post titled, Filling the Void. This post received many comments on the topic as well, and I encourage you to read it. Even though it has been four years since writing the post, our feelings are pretty similar today. We are almost 100 percent sure we will not have kids.
Last week while getting an ultrasound done of my heart, the technician asked if I had kids. When I told her no, she asked if it was because of the fear of passing PKD on to our children. I said no, because I am so proud of my parents and thankful that they brought me into this world despite the 50 percent chance my mom had of passing on PKD. I told the ultrasound tech that it was much more than that. My back issues would make me unable to carry a pregnancy, and if we went the surrogate route or adopted a child, I would not be able to hold our baby because I can’t lift anything heavy. For those reasons, and with my kidney transplant, I would be concerned about putting extra stress on my “gift of life” and possibly losing my kidney. With a suppressed immune system I could get sick very easily from our child, and if they were ill, I could not be around them for fear of catching what they had. I have so much going on with my health that I don’t think it would be fair to a child, my husband, or myself to have kids. Our conversation wrapped up with me wondering aloud if my maternal instinct will kick in one of these days and I’ll desperately want to be a mother, or if my mind subconsciously doesn’t let me go there because it knows what is best for me.
It can be difficult finding married friends our age to hang out with because it seems like everyone has kids, and when you don’t have kids, it is hard to socialize with those that do. Since writing my blog post on this topic four years ago, we have found several really amazing friends our age who do not have children and share similar sentiments on having kids. We treasure our friendships with them, enjoy our adventures together, and take comfort in knowing that we are not the only ones diverging from the “normal” progression/timeline in life.
The key to Noah and I being happy about not having children is that we are wholeheartedly content. We are fulfilled with each other and do not feel like anything is missing in our lives. We enjoy our freedom, each other, our love for adventure, taking trips, seeing new things, cooking dinners together and having deep conversations about life and us. We know that we wouldn’t be able to do many of the things we do now if we had a child. We understand how our lives can change in a second with my health, so we truly soak in and appreciate each healthy day we have together. While I know that Noah would be an extraordinary father and I sometimes wonder if he would want to be a dad if he were with a healthy woman, I am forever grateful for his patience, support and how he embraces and loves me for who I am. I am blessed to share this journey with such an incredible man. We are a family and I am proud of us.
My mom recently told me, “We always want our children to have better than we have.” Even if I never have the opportunity to be a mother, I can deeply connect with her sentiment because I feel the same way about the PKD community. I want all of you to have a better PKD journey than me. Through sharing my story, writing and volunteering, I hope I can leave a positive legacy and pave the way for a better future for generations to come, as parents do for their children.
I’d love to hear your stories and/or your thoughts on having children.
Thank you Valen for sharing your intimate thoughts with us on this subject. It is a very personal decision to be made, based on factors unique to each of us. There is no right or wrong answer because there is no way for anyone else to ever have enough information to pass judgement on someone else’s decision. I am glad to hear you say that like me, you are grateful for being born. We lead amazing lives, all of us, and as I like to say, everyone has “something” whether it’s PKD or whatever, whether it’s physical or emotional… My wife and I also decided not to have kids, but the possibility of passing along PKD never entered the conversation. I strongly believe that with the amazing advances being made now, not only in PKD research, but medicine on general, that kids born today will most likely suffer much less than any generation before.
Thank you very much for your beautiful response and thoughts on this topic. I completely agree with your sentiments and I appreciate you sharing them for all of us to learn from. I hope you are well and look forward to seeing you at the Gratitude event.
The first conversation I had on the phone with my doctor when I was in shock of this diagnosis I was asked bluntly, “do you want kids?”. I said, yes, I always thought I would have children, why? He immediately starting talking about IVF, as if that was the only option. I am devastated and still mourning the loss of knowing I hold a moral obligation to either have children naturally and do something selfishly, or to wait and try and pay for a procedure that is outrageously expensive and not easy.
Thank you for this article. I am still coping with this diagnosis and still in denial and shock this is now my life.
I can empathize with how you’re feeling. I have met several people in the PKD community who have had children. For me personally, I chose not to because I can’t carry a child on my own due to scoliosis and I navigate several chronic illnesses that would make parenting challenging and also as a dual-transplant recipient I worry about being immunosuppressed and navigating raising a child. However, I have met several people in the PKD community who have had children. Some had their kids pre-transplant and others post-transplant and they are all doing well. This is a very personal decision and also depends on the health of the individual. There is also surrogate – I’ve seen some in the community go that route too. Be kind to yourself as you navigate this diagnosis and your path with PKD. Follow your heart. Wishing you all the very best!!
Thank you for sharing! My husband has PKD and we decided to have a child before he became too ill. We do not know if she has it. I appreciate that you are happy to be alive, because I am concerned about having another and possibly having 2 children with PKD as I only have 1 kidney to give if ever needed. Your life sounds lovely! We love our daughter to the moon and back but I will affirm for you as the healthy parent it is very stressful and difficult. My husband is doing home hemo 4 days per week and many parenting duties fall to me. We have almost no free time to spend together as a family due to dialysis. I love my life and my husband and daughter and I would not change anything, but we made the conscious decision to have a child, and not truly knowing how hard it would be with dialysis. It sounds like your life is lovely and you wouldn’t change it either! It’s great when we can be confident in our decisions no matter the social norms that persist.
Thank you very much for sharing your story in an honest and sincere way. It is not easy to be in your shoes as a caregiver, wife and mom. I commend your strength, love and dedication to your family.
I agree that it is great when we can be confident and at peace with our decisions no matter the circumstances. I believe that when we feel this way, we can overcome anything.
I have not been blessed with good health, but rather unconditional love and I try and focus on that love to get me through all of the health issues. But overall, I would agree that my life is “lovely.” 🙂
I wish you and your family good health, happiness and all the best! I hope your husband is able to get a kidney real soon!
I think its a tough subject- and for me I was told I shouldn’t have kids because of my PKD and hypertension. Now, added on the increased risk I have for brain aneurysms (luckily all fixed now!) I do wonder if we want kids and if so would adopt, however I do have kicks of baby fever and wish I could have one of our own. We could, but at what expense? My health and possibly my life? It is hard seeing most of our friends with kids- but instead we are planting a garden, and eventually collecting animals 🙂
I can totally sympathize with all of this. This is one of those follow your heart kind of situations and I hope you are able to come to peace with whatever answer you decide and trust it will all work out. Noah and I are with you on doing house work and animals. We have a dear cat that we call our “son.” 🙂 We find great enjoyment in our new home, our cat and each other. If that winds up fulfilling you and making you happy, then that is all that matters. Wishing you all the best as you continue on the path of “to have or not to have kids.” Hugs!
Hi everyone. I got diagnosed with PKD 3 years ago. (Im 33) I had already had my 2 boys prior to realising I had the disease. I wouldn’t change a thing! I have lived and am still living a wonderful healthy life. When I found out I decided there and then that I was going to live my life to the fullest! I’m a fitness instructor now! Complete change from working in offices and call centres, but my diagnosis made me rethink and evaluate what I was doing. I’m basically trying to turn what could be thought as a negative into a positive, and be on the best possible state of mind and health to deal with what the future holds as A PKD sufferer. My Dad passed away 3 years ago due to the disease, but was a heavy smoker, drinker etc… He didn’t know he had PKD until it was too late. So I’ve made a positive decision to live my life and I want my children to. I encourage healthy eating, drinking lots of water and exercise and have also made the decision not to tell them that they could possibly have PKD until they need to know. I believe it would cause unnecessary worry and they should live their little lives to the fullest. There’s always someone that’s worse off than you and in so grateful for my life and my family!! So glad I can share this with you all xx
Hi Nicola Lee,
I’m 34, so we are very close in age. Thank you so very much for sharing your personal story with us and most of all your positive spirit. We are kindred spirits in that regard and I appreciate you sharing your healthy energy on my blog for others to be inspired by and to learn from. I believe our mindset has a lot to do with our health and I trust that wherever your PKD journey leads you, that you will be just fine and able to overcome whatever obstacles. Hugs!
I made the decision never to have children at the age of 15 when I was first diagnosed by ultrasound. I didn’t know anything about PKD except that there is no cure, so I chose not to pass it down. This decision was very easy for me since I had been essentially adopted (my grandparents got permanent custody of me anyway) since infancy. (There are 20 million children that are in need of families worldwide.) I do love children very much and have taught Sunday School class and “borrowed” my neighbors kids in order to teach them how to do fun things like paint murals, cook, and garden. I live life to the fullest and am glad I am alive (thanks to my parents) and I have no regrets never have had children.
Thank you for sharing your story and beautiful perspective on this topic that many can be inspired by and learn from. I love how you have impacted kids lives in your own unique way. Reminds me of my thought process that even though I don’t have kids, that I am still involved in kids lives and helping them through the PKD work that I do. The same applies to you! I commend your wonderful outlook on life and having kids. Wishing you all the best!
We were a family of three my husband who inherited PKD from his mother, me, and our daughter. He did not know that he had PKD, and the fact that it could even be a possibility was hidden from him by his mother, so we began our family. Our daughter was a toddler when he was diagnosed, and we agreed that she would be our one and only. He was a marvelous husband and father and our daughter grew up feeling loved and cared for. She was out of college and working in a successful career when the cysts took their toll on him. He too had a transplant and was able to live life another six years after that until he passed away. He often talked with me about PKD and his hopes for our daughter not to ever have it, as it ravished him and he never wanted her to go through the pain caused by the disease. It has been three years since he passed, and our daughter has since been diagnosed with PKD also. I know from our discussions that this would have sent him to a place of deep darkness, but I think he would have eventually rallied to support her through this time. And I hope that she will follow his example and live life to the fullest with the cards that she has been dealt.
Thank you for sharing your families beautiful journey of support and love. I am so sorry that your husband passed of PKD. He sounds like a wonderful, strong and caring family man. I commend you for your strength through all of this as the caregiver, wife and mom! It sounds like you two have set a wonderful example, that I’m confident your daughter will follow his example and live life to the fullest with the cards she has been dealt. Hugs and wishes for good health and happiness for you and your daughter.
Why did your husband die? Was the transplant a failure?
My parents were advised not to have more children after my mom was diagnosed with PKD in the late 70’s. It runs in our family…my grandmother, my mother, my mom’s only sister, and my only cousin on that side all have PKD. I am so lucky they decided not to take the doctors advice, or I would not be alive. I haven’t been diagnosed, but so far all signs point to me not having it. For other reasons I’ve been contemplating life without children, and your story is comforting and humbling. You are brave and strong…and most of all inspiring. Thank you for sharing!
Thank you very much for sharing your touching story. When my mom was pregnant with me, her doctor suggested she get an abortion because of passing on PKD. The abortion was scheduled, but thank goodness my mom did not follow through with it. I too am so lucky my parents decided not to take their doctors advice.
Fantastic that all signs point to you not having PKD! Yay!!!
I’m so glad you found some comfort in my story. You sharing this and your kind sentiments mean a lot! Wishing you all the best!
My husbands mother was adopted and died when he was 5. NO ONE knew it was PKD until both of my husbands brothers were diagnosed 2 years ago. We lost one brother and now the other is waiting for a possible transplant. I have two children 15 and 18. We were not able to make this decision. It is so hard for me as a mom when I think of all the what ifs. I appreciate you sharing your journey. It is something that I will share with my children.
Thank you for sharing your family story. Does your husband have PKD, or just his two brothers? I’m so sorry that you lost one of his brothers and I hope the other receives a kidney real soon! The “what ifs” are hard! I know my mom thinks a lot about “what ifs” and I try and encourage her not to focus on them as I am so grateful for my life and what I have. As hard as it can be some days, I try and focus on the good versus all of my health issues. It means a lot knowing that you will share my journey with your children. Thank you! Wishing you and your family all the best! Sending a big hug your way!
I live in a little country called New Zealand 2 hours flight from Australia our family never knew what was PKD until I got sick 2010 my pkd was APKD assuming Adult polycystic disease I was diagnosed at age 44 by then I had 5 children but with lots of research I soon realised I got it from my mother we never knew she has pkd because technology in 1932 was never invented. I too worry for my children having children I have told my children that it possibly get passed on to them I now have 2 grandchildren,reading your comments has made me realise I can only tell my children about pkd and it is there choice to decide if they want children or not thank uz all for your comments god bless uz xxxx
Hi Teri Te Whaiti,
So fun to know my story has reached New Zealand. Thank you very much for sharing your family history. You are doing a great job by educating your children the best you can and then giving them the freedom to decide whether or not to have kids. Wishing you and your family good health and happiness!
I am one of six daughters; four of us with PKD. I am the only one without children – not by choice, but rather by biology. It hurts deeply that I can’t have children, even more so as when I was 35 my husband passed away – just two weeks before we were meant to adopt two children.
People assume that I don’t have children because I never wanted them, or because of my kidney disease. And many people think that it’s a decision I made happily and willingly. Unfortunately, that means that when I meet others in my age range (now early-40s) they think we have this joyous “child-free by choice” lifestyle in common. And it just adds to my child-free pain.
However… I do sometimes wonder what would have happened if I had been able to have children. Would I have given thought to having them (or not) because of the odds of passing on the disease? I don’t know, and I was never given the chance to wrestle with that demon. But I would absolutely support anyone who decided to give it ago. After all, my PKD sisters all had children and passed the disease on to each offspring… and those nieces and nephews are far more than their disease! And with medical advances, they may have little or no issues with it!
Thanks for sharing your story!!
Dear Just Frances,
Thank you so much for sharing your personal and touching journey. I am very sorry to hear of all the pain you have endured, but I can also feel your strength and positivity through your words. I appreciate you sharing your wisdom for all of us to learn from and be inspired by. Wishing you good health and happiness as you continue forward on your beautiful journey.
Hi everyone. My name is Emma. I am 22. I was diagonised with PKD this time last year and I am very concerned about having children. My whole life I have always dreamt about being a mother. I feel like my life won’t be complete until I have a baby of my own. After being diagnosed my parents were so upset as my father has it and he knows the chances of my children inheriting this disease. He told me that he didn’t know he had it before they had me but even if he did he still would have had children. My nephrologist told me that because of my age that the younger I get pregnant the better as it will mean less risks during my pregnancy but I’m so much more concerned about my children inheriting this. I would hate for my child to turn to me someday and blame me for having them knowing what I could be passing on to them.
Thank you very much for sharing your raw emotions and valid concerns. I have never once been bitter towards my mom for passing on PKD and bringing me into this world, regardless of all of the health issues I face on a daily basis. I’m grateful to be alive and experience unconditional love. I am actually proud of my mom, knowing all that she was enduring at the time she made the decision to have me. Her doctor scheduled an abortion and mom decided not to follow through on the day of the scheduled abortion. Crazy that I was that close to not existing.
When you are in the position in life to have children, it is something where you must follow your heart. I think it is important for you to discuss it with your doctor to make sure it will be safe for you, but ultimately your heart needs to guide you. That is what guided my mom to cancel the abortion.
Encouraging news is all of the trials and research taking place, that hopefully by the time your child would face any issues with PKD, that there would be a treatment and cure for it. I wish you all the best as you navigate this difficult decision on your beautiful and meaningful journey. Sending you a big hug!
I am a nephrologist and don’t have ADPCKD. However my son’s wife’s family suffers from Huntingdon’s Disease – another dominant genetic disorder with a lot of suffering. I’d just like to say that things have improved over the years in the ADPCKD and renal failure world and I think they will continue to do so. Each person needs to make their own individual decision about children. Don’t not have children because someone else thinks it is wrong to perpetuate a defective gene but don’t be persuaded to have children if you feel your own health will adversely affected. It’s a very personal decision and only you can make it. Children bring tremendous joy and the abscence of children for some brings tremendous sadness. Every child has gifts and will bring them to the world. There are many diseases out there and ADPCKD is only one of them (not to diminish the suffering you all face and the bravery with which you face your lives). I just want to say don’t feel guilty if you choose to have children and don’t feel forced to have children if that choice is not right for you. Good luck in your decision.
With your own personal experiences and being a nephrologist, I very much appreciate you sharing your personal sentiments on this topic. Thank you for reading my blog and for your insightful feedback. Wishing you and your family the best.
I am in the same boat as you. I was diagnosed as a young child with PKD. Now that I’m 27 my Nephrologist told me to not wait very long to have children either. My husband and I were hoping in 2 years. But now depending on my kidney function it should be sooner than later. I also understand about passing the disease on to your children. That scares me too. A part of me now does not want to have my own children but possibly adopt. Another part of me feels I would be making a mistake.
I inherited PKD from my biological Father, whom I never knew. So I knew nothing about PKD until I was diagnosed at the age of 31. My Husband and I already had all three of our girls by then. So I never had to make that decision. I now feel for our three girls but will support them with whatever decision they make.
Thank you for sharing your family story. Your three girls are lucky to have such a supportive mom. I wish you and your family all the best!!!
I inherited PKD from my Dad who died at age 54 in 1978 after two failed transplants and many years of dialysis. I was diagnosed with PKD that same year along with my older brother. So far only 2/4 have been tested (by choice) and one is positive for PKD. I was told at 18 to have my tubes tied–I did not. I had always wanted children and was up front with my husband about the odds of having a child with PKD. Our children are now almost 33 and 34 and continue to test negative for PKD. It is a blessing beyond belief. I am now 56 and at the low end of stage 3. I take Tolvaptan and I am having some kidney cysts aspirated and foamed in August. I feel life with PKD has come a long way since my Dad’s journey and for that I am grateful. I think the decision to have children or not is such a personal one and that no one should be criticized regardless of their decision. I remember how my Mom struggled raising four little ones with a seriously ill husband.
Thank you for sharing your family journey. We are all affected so differently from PKD and I completely agree that things have come a long way since the time period that your dad was enduring the disease. My mom’s mom passed at 53 when my mom was in her early 20’s. Hard to believe that back then dialysis was a relatively new thing. We have come very far in a short time and that gives me great hope for future generations. Amazing that both of your children test negative. I hope they will continue to be on the good side of the 50% statistic. I appreciate you reading my blog and sharing your story and insight on this topic. Wishing you the best!
I would love to talk to you! We have a few things in common. I’m 56,I have 3 kids and have been on Tolvaptan for 10 years. I’m also stage 3. My Mother died at the age of 72. My sister was transplanted at 50. I’m interested in the procedure your having.
Thank you for reading my blog and for your comments. You and Phyllis do have similarities and I hope the two of you can connect. Wishing you the best!
Hi ¡! I ‘ m Noemí , 33 years old , and from Barcelona ( Spain ). Thank’ s Valen for your blog , It really helps me .. ¡! I have PKD , my grabdmother died for this illness , my mom received his transplant 2 years ago..and seems is not going good . … now I ‘ m in that moment …my best wish was become a mum .. but some doctors says me that it has lot of risks. My kidneys are so big and I don’ t have so much space… and perhaps I ‘ m too egoist if I pass It to my don… but ..I think must be wonderful to create my own family someday. Let’ s see …I will think about everything before I take the last decision .
I Would like to know some information about tolvaptan as well..please…. in Spain has just been approved … and I want to participate in a ” clinic test ” … what are the advantatges??? And what the negative signs to have these drugs ??
Thanks a lot , good luck ..
Thank you so much for introducing yourself. I love meeting people my age. I’m 34. I also love to connect with people from all over the world and it is so fun to know that you live in Barcelona, Spain. It means a lot to know that my blog helps you. 🙂
Having kids can definitely be a tough decision for those of us with PKD and I hope all of the comments on this blog helped provide support and comfort that you are not alone.
Here is a link with several articles about tolvaptan on the PKD Foundation website in the U.S. Check these out and see if they answer the questions you have. If not, please let me know and I’ll try and help find the information you are looking for.
Wishing you the best!
Valen you are oldest, wisest young person I know…You’re so insightful and thought provoking – I just Love it!!! Anyway, I think PKD made my childbearing decision for me-I was diagnosed at 17 an became symptomatic at 19 and my decline was pretty steady from there. I love kids always imagined I’d have a few of’em. I’m 1 of 9 kids 7 with PKD I’m the only one with no kids…My parents had 10 kids. This long before anyone knew anything about PKD. About 7 years ago as I was researching my on ancestry, I found my maternal grandmother and great grandmother’s death certificates. I knew they both died when my mom was a little girl, but I wasn’t quite prepared for this!!! Her mom died on June 8, 1936 of Bright’s Disease, her Grandmom died June 9, 1936 of hemorrhagic kidneys. My mom wasn’t 3 years old yet, she was such a wonderful loving mother to us, she made me want to be a great mom!!!! I was Blessed with some amazing nieces and nephews, who now have kids and I’m auntie and Godmother, and I have 4 other awesome Godchildren. So PKD doesn’t always get to win!!!! I have a cute little Poodle boy laying here in the bed with me.
Thank you so much for your super sweet sentiments! They are very touching.
Wow! Your journey is amazing and very inspiring. I appreciate you sharing it with me and all of the blog readers. Your large family and ancestry information is fascinating. Your wonderful loving mom who made you want to be a great mom, instilled priceless qualities in you that have made you an incredible and kind human being who is touching many lives. I love when you said, “PKD doesn’t always get to win.” Oh-so true!!! I smiled when I read that you have a little Poodle boy laying next to you. I have a little sweet cat boy laying next to me right now. He’s my kid. 🙂 If you are on social media, feel free to friend me. I’m listed as Valen Cover Keefer. Learning your PKD journey and your positive spirit has brightened my day. Thank you! I’d love to learn where you are at/what stage you are in with your PKD health. Wishing you the best! Hugs!
Hello my name is Torrey. I was diagnosed with PKD when I was in third grade. Both my parents were tested but nothing really came about it. By the time I was 18 my father got ill. Unfortunately he’s not the type of person who likes going to doctors. When we finally got him to ER he was diagnosed with PKD. It was such a shock to us because he was tested years ago. My dad didn’t want to go on dialysis or do anything. We finally talked him into doing it. He was on dialysis then hemo at home. He lived 3 years. Didn’t take care of himself. Finally had a stroke and passed a week later. All I can say is I’ve only seen the terrible side of PKD. I’m glad there are so many people being proactive with there health. This past month has been a wake up call. I’ve had a terrible kidney infection so my kidney function has declined a little. My nephrologist and I are hoping it’s just from the infection and not the PKD.
Thank you for reading my blog and reaching out. I appreciate you responding to Emma’s comment and sharing the challenging emotions when it comes to having PKD and deciding whether to have children or not.
I’m very sorry that you had to watch your father endure so much and pass away because of PKD. I’m sure it was hard to see him not take care of himself. PKD is terrible, but some good can come from it and I try my best to focus on that. Sometimes when our body faces a lot of stress and illness it can affect our numbers, like kidney function, in a negative way and then once things settle down, our numbers adjust accordingly. This has happened to me before and I hope that your kidney function bounces back after you recover from your kidney infection. Wishing you all the best on your PKD journey and as you decide whether to have a child on your own soon or to adopt. Healing hugs!
My father had Pkd and 56 both were removed and he lived on dialysis for 10 yrs. I was 17 when my son was born. I tryed to give my dad a kidney thats when I found out about Pkd. I was told to go back hm and get tested. My dr. Then would not test me he said if i did there was nothing they could do. I didn’t know my dad he left me when i was 3 yrs old. So I started looking up every thing I could. Had to have surgery and that is when they fould both kidneys were cover first thing I felt was what did I do to my son. He refused to be tested for long time but now I still live with knowledge this is my faught. Will never forgive myself. He had a beautiful baby girl and at 8yrs they discovered she has Pkd. I understand why u chose not. Guilt is to much to bear never goes away.
Oh dear Sherry! I’m very sorry that your father left you when you were young. It also saddens me to hear you say that you’ll never forgive yourself. Please don’t look at this as your fault. You would never have intentionally chosen to pass on PKD. You gave your son life and now he has created life by having a daughter, and that is beautiful. PKD is tough, but it is important for us to enjoy this life. I hope that the guilt you experience subsides with time. I’ve never been angry with my mom for passing on PKD to me and I trust your son shares the same sentiments. Sending big hugs!
I definitely think everybody should have the right to make their own decisions about having a child when one parent is PKD positive. Most people do decide to have kids regardless. 30%, however, do not, and they’re often reluctant to speak up about it.
I’ve personally decided to get a tubal ligation and I couldn’t be happier that this burden ends with me. I love my parents but I am extremely angry at them for having babies even though they knew they had a 50/50 shot at burdening us with this absolutely horrific disease. I don’t say this to make others feel bad – obviously everyone feels differently about it, and there really is no right way to feel when you’re the child in the situation and you’ve ended up with the rotten side of the coin flip. I just think it’s important to acknowledge that there are those of us who feel this way, and often times our voices are not heard.
Thank you so much! I appreciate you sharing your journey, insight and perspective on this topic. Wishing you all the best!
I strongly agree with this comment and want to add my experience as a 23 year old diagnosed close to a year ago. I am concerned reading through these comments that the viewpoint of the child isn’t adequately represented, from my experience the psychological toll on the young adult navigating this diagnosis (and the resulting family issues) is excruciating. It has affected me to an extent from which I will never fully recover. Speaking as someone who deeply, profoundly desires children herself I implore anyone reading this to try and put themselves in my shoes. There are IVF options to be considered, but I respect that others may have different opinions than mine. In the event that one has children and may be passing on this disease, it is VITAL to think deeply about how and when you will communicate this with your child(ren). Please, please read up on the latest advice from experts and consult a therapist and genetic counsellor before proceeding, and/or after children are born. The feelings of betrayal, shock, and anger a child may have can run very deep and possibly cause severe damage to relationships- in my case, though it could have been mitigated, relationships will never be the same. I struggle daily to find a modicum of joy in the uncertain, terrifying life I know is ahead and will never be enough for me. Thank you for reading.
Thank you, Sofia, for sharing your heartfelt and raw sentiments. I really appreciate it. My doctors suggested my mom get an abortion with me. The appointment was scheduled. My parents were sitting in the parking lot of the hospital and my mom was devastated and started bawling and they drove to her doctors office and said they couldn’t go through with it. I am so grateful they made this hard decision because it led to my life being saved. Yes, I’ve had an extraordinarily challenging life because of PKD, but it has also been extraordinarily beautiful and I’m so grateful to be alive. I’m 38 and had a kidney transplant at 19 and a liver transplant at 35, both needed because of PKD. Shifting any fear or negativity to gratitude has been a huge help for me along this journey. Sending love and wishing you all the best!
Hello everyone. My husband has been diagnosed with PKD after we had our first child. We made a decision not to have anymore biological children, but we have a heart to have a second child through adoption. Has anyone felt that having more than 1 child was an overwhelming responsibility for a parent with PKD and for the parent who does not have PKD (who will likely be taking on more parental duties)?
Also, may I please ask how this disease has affected employment for people with PKD, as that also can impact a person’s ability to have a family? Thank you.
Thank you for your comment. I hope others see this and respond to your sentiments. For my husband and I, we decided not to have children. I am 38 and he is 39. I had a kidney transplant when I was 19 and a liver transplant when I was 35, both needed because of PKD. I also have scoliosis and two rods along my spine and would be unable to carry a child. We are planners and with being a transplant recipient for almost 19 years and now a dual transplant recipient, we could not imagine a child in our life and didn’t think it would be fair to any of us. An example is when the child would get sick, I would not be able to help care for our kid because of having a suppressed immune system which would be so hard and then it would put that added task on to my husband who works full time and we just envisioned how hard things like that would be for all of us. Fortunately, we are very happy together and don’t feel like anything is missing in our lives.
For me, I am unable to work full time because of my scoliosis issues. Transplantation definitely comes with health hiccups and having to live differently because of having a suppressed immune system, so at times I feel like my health has been a lot to navigate and I can’t imagine caring for a child amongst it all. However, I think in life you are able to do far more than imagined and once you have a child then you just make things work. I believe it is dependent on the relationship and like you said if you as the parent who does not have PKD, if you are willing to take on more duties at times. I know this is a tough decision and believe it needs to be a joint decision and if you handle things in life as a team, then I’m sure anything is possible and you need to follow your heart on this one. Wishing you all the very best!!!