I'm 33yrs old and I was diagnosed w/VHL in 2001. After several hospital stays and surgeries, I've been sort of on cruise control these last 6-7yrs, monitoring my cysts, tumors, kidneys, spine, etc. For the last few months the thought of having children has been on my mind.
My husband and I haven't talked about having children for a while now. Since we're not getting any younger, I asked him a few nights ago what his thoughts were. He told me that he wants kids but we need to at least be able to catch up on our overdue bills and be able to "break even" every month. I agreed with him.
My biggest concern isn't the financial factor of IF we can have kids. It's The VHL Factor I'm worried about. Please don't feel like you have to answer every one of my questions. I'd appreciate any feedback you'd have!
1) How did you or your mate's VHL status come into play? What made you decide to or not to have kids? Did you find out the status of your baby before you gave birth?
2) I know we all have different symptoms and situations even though we're all afflicted by the same general problem, but how was your pregnancy?
3) I'm not so much concerned about if I end up "sick" and can't take care of a baby b/c we have a great support system. However, I'm VERY concerned about the day-to-day care of a baby ane, as s/he grows, a toddler. All the surgeries I've had in the past have left me on a truckload of meds (10 in all) most of which are for pain management. I hurt every day and it ranges from barely noticeable to unbearable where I hurt so bad I can't even sit still. I can't lift more than about 30lbs. and even if I can lift it, I sure can't carry it. Then there's the vertigo or balance issues I have. For example, I fell in my kitchen about a year ago b/c I just randomly lost my balance and I broke my tailbone. We joke that I'd never pass a sobriety test if I ever got pulled over, but it's true: I'd fail miserably! What were your physical limitations and how did you overcome them?
4) While 99% of my brain and mind are the same, I have trouble with my short term memory at times (I'm just now starting to admit to this) and I can't multitask. I have to have a schedule and a list. I can't leave the house to run errands w/o a list of where to go 1st, 2nd, 3rd, and what to do/get at each place. Have you lost or had some kind of mental trouble or "change in the brain" that you didn't have before? And if so, how did you manage it while caring for and raising your wee one?
And finally:
5) It takes me twice as long as a "normal person" to do things (like write an email ::wink, wink::) and I'm always pushing off things to the next day; Important things. For example, I have to take a bath every other day b/c it takes me 2 hours from jammies to jeans or vice versa. My mom would say just go step by step but what happens when you can't go up or down any more steps? Do you just camp out on the step you're on until the next morning? Does this question make sense?
If you've been kind enough to read this, THANK YOU! I'm really interested to hear about your experiences b/c I've been thinking about this for a while now and I'm really worried about how I'm going to be able to care for a helpless little baby when I can barely take care of myself, husband, and cat!
Rebecca.
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What Is It Like to Be a Parent w/VHL?
- By beccaloo
- Posted March 4, 2009 at 3:38 pm · 3 replies
- In Parenting issues
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3 replies
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- By pupa
- Posted March 5, 2009 at 8:03 am
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Dear Rebecca
I am the mother of a teenager diagnosed with vhl. In my opinion go for it. Yes it will be hard maybe very hard, but what are you made of as a vhl patient you are brave and strong if you have your husbands support, than the rest will just fall into place and you will cherish the dream that you deserve. Some people wait alll there live to have a child and some it is so easy, take everything for today and live life to the fullest.
- By karenga01
- Posted March 5, 2009 at 8:08 am
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Rebecca,
I can completly understand. I just turned 35 and always said I would never have a child. Then I met my wonderful husband Tim.I was diagnoised with VHL in 1993 via a brain tumor but I got the DNA test in 1998. To my surprise I am the only one in the family withe this lovely gift.
At 33 we made the choice to do PGD so that I wouldn't pass this on to our child(ren). Come to find out I'm not producing eggs. (Great...something else that doesn't work right!) We did want to use a doner egg and I didn't think that an adoption agency would let us adopt. Again I was wrong.We were matched to a birthmother who was due to give birth on 2/28/08,the day after my birthday. To me that was ment to be. Our son was born 3/4/08 and put in my arm two days later. In between the time we were matched and the time he was born I had 2 brain surgeries. The second one left me unable to work,use my left hand and I even needed a walker. I was devistated! I just knew that the adoption would fall through. I went throught two months if physical and occupational threapy. I still have a hard time. I just say that my son will learn patience. I haver the same problem with vertigo as well. I have learned that I do get a sensation before it comes on so I sit down, etc. I am on disability now. If it is something you want it can be down. it wil just take modifications. You get creative. I would sit down with the baby in a sling then go down on the stairs on my butt and stay down their until my husband would get home at night. Everything I needed was downstairs. I hope this helps. Please feel free to e-mail me with any questions kgambon@bellsouth.net.
Karen
- By MaryP
- Posted March 5, 2009 at 9:51 am
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I was diagnosed with VHL after my husband and I were married, but before we had children. Since I had taken care of my VHL mom all my life, I was determined to not pass this disease on and adopt instead (PGD was not available at this time.) After much thought, we decided to turn this decision over to the man upstairs. We did end up having two children. They are the greatest joys of my life. I did, however, have tumor growth during my pregnancies and a surgery after each delivery.
At the age of 13, my daughter had brain surgery and was also diagnosed with VHL. Of all I have been through with my mom, and myself, this was the toughest challenge ever. It nearly broke my heart. Even though we prayerfully made this decision to have children, I will still feel responsible for every trial my daughter has with this disease. We are now awaiting test results on my son.
I really don't know what advice to give you. Despite the difficulties, I can't imagine my life without my kids. My daughter has already made the decision that if she does have children, she will definitely go the route of PGD. If that had been available, I would have done it as well. Good Luck
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