Jump to content

Thinking about IVF - genetic condition


  • Please log in to reply
9 replies to this topic

#1 zorkus

Posted 07 January 2013 - 02:29 PM

Hi All,

My fiance and I are looking at IVF/donors to start our family. Recently I was diagnosed with a genetic condition which I have 75% chance of passing on if I have a bub and there is no testing that can be done to rule it out. We have no idea how servere the condition ould be either our bub could be in constant pain. So we have decided it is best if we don't use my eggs. I'm 27 and so is my fiance so we have some time to do this.

Does anyone have advice or knowledge they could pass on to me?

I feel saddened that I won't be able to pass on part of me but hopeful that I will someday be able to have a bub to love.

Thanks

#2 bright*future

Posted 07 January 2013 - 02:39 PM

Hi Zorkus,

*preg mentioned*

I'm sorry you're finding yourself thinking about this.

My husband and I did IVF with PGD (genetic screening of the embryos) to test for a 50/50 genetic disorder.  I remember how scary, bizarre and sad I felt in those early days when I was just trying to find out about what the options were etc, and find a way through to having our own, healthy baby.  I can remember sitting at the computer at home late at night crying and crying that I might not have my own baby.

I'm now 22 weeks pregnant with a very healthy little boy - both mine and my husbands genetically own baby.

You can use your own eggs if you want to. You are young and unless there are any other problems, you can get into a good clinic and start the process of IVF with PGD.  There is a buddy group in the AC Buddy Group's section, ladies in there are all doing PGD for different reasons, but you get to know each person very well as it's a long, hard journey.  Read back through the older "IVF with PGD" threads too to get some ideas about what actually goes on in a PGD cycle.

I am more than happy to chat with you via the PM system as I can remember very clearly how difficult this early time was, whether you decide PGD is for you or not, I am happy to share my experiences and answer any questions you have.

Sending you buckets of good luck & strength.

Quick edit - so sorry I missed reading that you can't do any testing to rule out the disorder.  We faced that too, there was about a 45% chance we would find the gene to screen against, and thank God we did.  I'm really sorry to have blabbed in irrelevantly about something you probably already know about. I'll leave my post in case it helps someone else one day, but still wishing you the best of luck and I am sure someone will be able to help you with info on donor eggs.

Edited by bright*future, 07 January 2013 - 02:42 PM.


#3 Bubble11

Posted 07 January 2013 - 03:09 PM

Do you mind me asking what you mean by a pain disorder?  I have fibromyalgia (which is a pain disorder), and they believe it is genetic, in the same way that multiple sclorosis is genetic in that you inherit a genetic predisposition to it.  If there was genetic screening available I would have had it done but it's not.  I'm currently 34 weeks pregnant, with a daughter (women have a better chance then men of getting fibromyalgia) who may or may not be born with or one day devlope fibromyalgia.  Fibromyalgia means I am in constant pain, varying amounts, some days good, some days very bad and have been unable to work for 8 years.  I'm only 30, and have been sick for the last decade.  I can't work, but I have a great family, a loving partner and I'm currently on the way to achieving two of my most important life goals - DH and I spent a while traveling, and now I'm pregnant with our baby.  

It took me a long time to come to terms with my illness and I struggled with the idea of passing it on.  But none of the leading doctors in my field consider it a reason not to have children, the unknown potential for passing it on that is.  I live in constant pain, but I'm used to it, a lot of the time it's more back ground noise then anything else.  I believe if my children inherit my illness I would be the very best person to help them through it, to help them realise that life is worthwhile, that you can live a good life and love life, that pain & fatigue don't have to define you.  They do limit you, but my life is worth living.  That's what my doctor asked me when I spoke to him about my concerns, was my life worth living, and I can honestly say if I'd known I was going to have this I would have chosen to be born, to live.  I have a supportive family and a loving husband, sure if I could be out of pain tomorrow I'd love to be, but I can't.  My life is worth living, my condition will not kill me, it isn't degenerative and you can live with an amazing amount of pain.  And I mean live, not just exist.  

I think you have to come to a decision you feel comfortable with, well you and your DF.  I know my husband didn't consider for a second that we shouldn't have biological children because of my illness, because of it's genetic nature.  If my baby has fibromyalgia I'm sure I will feel guilt, but from friends and reading I believe that's part of the state of being a parent.  I know I will wish she didn't have to experience pain like this, no one should.  But I am hopeful, maybe they will find a good treatment or a cure, and I believe that no matter what her life will be worthwhile, that her condition might limit her but won't define her.  I hope she never has to go through what I've been through, but I know you can get through it, and come out the other side and be glad to be alive and if she's sick I can show her that.

I'm not suggesting for a moment that you should change your mind.  You should do whatever feels right for you and I did consider for a moment how nice it would be not to have that worry, to use donar eggs.  It just wasn't the path for me in the end.  When I looked at it, I couldn't see a reason why.  But I'm not saying I get your individual situation, or feelings just that that's what I felt and my reasoning behing it.   And if you decide to do IVF with donar eggs I totally understand why you would want to.  I just wanted to tell you, as someone who is in pain 24/7/365 and has a genetically inheritable pain condition the conclusion I arrived at and why.    And in the end I know if I hadn't been able to concieve that IVF or adoption, I wouldn't really care about the means just about the outcome.  I've always wanted kids and the miracle in all this is that I'm pregnant.  Whatever way you find that's right for you take it.  I hope you find your donar.

#4 cme

Posted 08 January 2013 - 11:16 AM

Hi DP, It sounds like you are at the very early stage of the journey.

In terms of things you need to think about, do you have anyone in mind as an egg donor? Are there family members that don't have this genetic condition that you could ask or close friends who are aware of your condition? We're currently on the wait list for an anonymous sperm donor, I imagine the wait list for anonymous donor eggs is longer. Someone else here may be able to give you more details.

Have you selected a clinic or got a referal from your GP yet?

The other big thing you should think about at this stage is cost. Do you have health insurance? Are you prepared to try and get into the public clinics which are cheaper but have longer wait times? We probably spent $3k on our first cycle which was abandoned half way thorugh. I imagine I will be $4k out of pocket after the next one.

Best of luck.

#5 cme

Posted 08 January 2013 - 11:16 AM

wierd double post

Edited by cme, 10 January 2013 - 03:29 PM.


#6 zorkus

Posted 08 January 2013 - 04:54 PM

Thanks for the replies.

So my genetic condition is called Ehlers Danlos Syndrome, on top of this I also have fibromyalgia and some early arthritis. I am in constant pain and my joints often sublux and some dislocate, I have many soft tissue injuries strains, sprains etc. I have met kids with my condition except worse and while they are happy and fun loving I on't want to see my kid fall over and dislocate knees and hips every other day.

I have an appointment in february at my pblic genetic clinic who I hope will be able to refer me on to the fertility clinics, I have to get my foot into the public sector as when/if I get public I'll be classed high risk and will need to deliver in the tertiary hospital. I have private health insurance which I will use when I ttc.

As for possible donors I have ruled out my family due to the genetic condition and age. I have a few friends I could ask but they are still in the middle of having their own families. I know the wait lists for egg donors in Aus is quite long, but I am young so I guess whats a few more years.

Thanks for the replies and support.

#7 PatG

Posted 08 January 2013 - 05:02 PM

Hi, just a quick query - has your DF also been genetically tested and found to be a carrier of EDS?  I ask because this, in my limited understanding, is the only way the chances of your child suffering from EDS would be greater than 50%.

#8 zorkus

Posted 08 January 2013 - 05:05 PM

I'm a tricky customer I carry genes for both classical and hypermobility type Tounge1.gif

One is inherited from my mum (autosomal dominant) the other from my dads family(autosomal recessive)! So the 75% chance is sort of a best guess.

My partner is also going to be tested as he carries some eds traits...

Edited by zorkus, 08 January 2013 - 05:06 PM.


#9 Twinkletoot

Posted 08 January 2013 - 05:20 PM

Hi

If it helps my husband and I did IVF with pgd for a very rare genetic condition.  Most IVF clinics that do pgd only have capabilities to do some of the key genetic disorders - however after much searching we found that Sydney IVF (think they are now called Genea) can test for virtually anything.  It was a long process for the preparation - there are only two labs in the world that can test for my husbands condition, one in Europe and one in the US.  So we had to send off bloods to them (all done through Sydney IVF who arranged all) as they needed the testing done to find out exactly which chromosome and DNA strand (I know that is the incorrect technical term) were affected.  Once they had that information Sydney IVF could do the rest.  50% of my husbands sperm were affected however during the process I made friends with a girl with a genetic condition that affected 75% of her eggs - she has just given birth to her second child through genea using her own eggs - so using your eggs may not be out of the question.  We also know people that have used genea from interstate

#10 zorkus

Posted 08 January 2013 - 05:27 PM

I'd love to use my own eggs, unfortunately there is no genetic test for my condition anywhere in the world. They have not discovered the mutations in the genes yet, maybe in ten or twenty years I could get that test unfortunately my eggs would have started to degrade by then.


1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users

 

Special offer: The Baby & Toddler Show 2014

At The Baby & Toddler Show, you?ll find everything you need to get ready for your new arrival and guide you through the early weeks and years of parenting.

An open letter to Tony Abbott: please salvage our super

We face financial ruin, but most of us don?t realise it. If we don?t act together to salvage our superannuation, I have no doubt the new GFC will be the Girls? Financial Crisis.

'I'm happy to know I'm changing lives': surrogate mum of two

I know that once the baby is born, I will focus on the gift I have given, and watch the parents with their new child. I can't wait for that day.

Birth trauma and the issue of informed consent

There is a perception that women should just be happy they have a healthy baby in their arms. But for women who experienced birth trauma, there's a lot more to it.

Tips for managing pollen allergies and hayfever

They're simple tips, but they can have a big impact on those who suffer from hayfever and pollen allergies.

Ada Nicodemou shares tribute to her stillborn baby

Just over one month since Ada Nicodemou and her husband lost their second son, the Home and Away star has shared a touching poem for her baby.

Mum causes stir breastfeeding on train

?To the woman breastfeeding her kid on the train. Seriously! On the train?" began the letter of complaint.

10 things they don?t tell you about being pregnant

As I slowly waddle my ever-changing pregnant body towards the finishing line of my due date, it?s becoming increasingly clear there are a lot of things they just don?t tell you about pregnancy.

Overcoming a fear of the dark

A toddler's fear of the dark is very normal, but there are ways parents can help children through this stage in their development.

Kids, TV and movies: how young is too young?

It seems you don't have to throw the TV and iPad out the window - it all boils down to moderation, supervision and interaction.

Video: Baby's first birthday is a special day for mum, too

?A baby?s first birthday is also mum?s first birthday.?

The day Supernanny came to tea

Prince William's favourite celebrity child trainer Jo Frost puts Bryony Gordon and her toddler through their paces.

Tales from the homefront

When you're at work you sort of assume that your house is basically just sitting there quietly doing nothing until you return. However, since spending my days at home, I've learned this couldn't be further from the truth.

The words I hated hearing as new mum

It was less than a week after my son was born that I first heard it - from my mother.

To the pharmacist who sold me baby formula

On the rare occasion I catch sight of you at school, or around town, I think back to our earliest exchange. I?m sure you have no recollection of it at all.

Babies may benefit from autism therapy

Children showing signs of autism don't usually receive early intervention until well into toddlerhood or later, but a new study suggests infants with symptoms of the developmental disorder might benefit from therapy from as early as six months.

Knatalye and Adeline born with an everlasting bond

Knatalye Hope and Adeline Faith are a lot like any other identical twin girls, but there is one dramatic difference: they're joined at the chest and shares several internal organs.

The question this dad wishes he'd asked his wife

I should have seen that my wife wasn't the same person I'd fallen in love with, but we were both too focused on simply trying to get by.

Why we should talk about the deaths of the Hunt children

The deaths are too horrible even to think about. Yet we owe it to the children - Fletcher, Mia and Phoebe Hunt - to think long and hard about it all.

Baby dies of meningococcal weeks after vaccine application denied

A six-month-old girl has died from meningococcal disease just weeks after an application for government funding of a vaccine for the most deadly strain of the virus was rejected.

Finding the right balance when playing with your kids

Being too involved in our children?s play and not allowing our kids enough free time for unstructured activities can mean our kids miss out on the value that play offers.

Creative DIY light shades

The Pop Light light shade comes in a flat pack already made - it's up to you to design it as you'd like.

The battle of iParenting versus imagination

Have we forgotten how to be imaginative, resourceful parents?

Why movement is so important for your baby's growth

Letting your child move as much as possible in the early years ? using all senses, engaging in the real world, preferably outside ? will help them grow up healthier, smarter, calmer and stronger.

Download now: Essential Kids Activity Finder app

Got bored kids? Quickly find the best activities for kids wherever you are in Australia with the Essential Kids app.

 
Advertisement
 
Advertisement
 
 
 

What's hot on EB

Special offer: The Baby & Toddler Show 2014

At The Baby & Toddler Show, you?ll find everything you need to get ready for your new arrival and guide you through the early weeks and years of parenting.

Win a House of Magic prize pack

To celebrate the release of the new movie House of Magic, we have 10 double passes and magic sets to give away just in time for these school holidays. Enter Now for a chance to win!

Losing yourself to motherhood

While watching your baby grow into a unique little person is exciting and wondrous, the intensity of meeting everyone else?s needs can ever so sneakily overtake your own needs for self-care.

Tearing during delivery: the facts

Almost all women will experience bruising, grazing or tearing after a vaginal birth. Depending on the degree of tearing, there are various treatments available.

6 tips for a day out with a baby and toddler

Outings can be lots of fun with the kids, but there are inevitable challenges. Here's some information about days out to help you be a little more prepared.

Why I invited a dozen people to watch my son's birth

I sent invitations on burgundy scrapbooking paper stamped with a field of poppies, and told each person why I wanted him or her there. I warned that there would be nudity.

Getting labour started: tips for a natural induction

When your baby?s due date comes and goes without so much as a pop - let alone a bang - it can be disheartening. Mums and a doula share their stories of natural inductions.

7 mistakes old hands make with new babies

As I sat across the table from my friend ? me, a seasoned mother of three; her, a brand new mum ? I thought of all the mistakes an old-hand parent can make when visiting a newborn baby.

That's my boy: a dad's diary of the first 4 months

Unbearable anxiety, unspeakable joy, constant exhaustion and bouts of frustration ... The many shocks of first-time fatherhood resound in a dad's diary of his son's early months.

One of the most important things a new mum can do

Finances may not be as cute as a newborn, but with many women?s working arrangements changing post-baby, monetary matters need attention too.

6 things I didn't expect as a parent

From weird smells to dangerous opinions, painful body parts to numbness, here are a few things new mums and dads can expect.

Personalised baby gifts

We've scoured the internet to find gorgeous personalised keepsakes and nursery decor to record baby name and dates. They make great gifts for christenings, name days and birthdays! (All prices in AU.)

 

Reader offer

2 FOR 1 TICKET OFFER

For Shopping, For Advice, For Baby & You. Enjoy a special day out with fabulous shopping from over 200 brands, leading parenting experts offering advice on a range of topics, and amazing children?s entertainment

 
Advertisement
 
 
Essential Baby and Essential Kids is the place to find parenting information and parenting support relating to conception, pregnancy, birth, babies, toddlers, kids, maternity, family budgeting, family travel, nutrition and wellbeing, family entertainment, kids entertainment, tips for the family home, child-friendly recipes and parenting. Try our pregnancy due date calculator to determine your due date, or our ovulation calculator to predict ovulation and your fertile period. Our pregnancy week by week guide shows your baby's stages of development. Access our very active mum's discussion groups in the Essential Baby forums or the Essential Kids forums to talk to mums about conception, pregnancy, birth, babies, toddlers, kids and parenting lifestyle. Essential Baby also offers a baby names database of more than 22,000 baby names, popular baby names, boys' names, girls' names and baby names advice in our baby names forum. Essential Kids features a range of free printable worksheets for kids from preschool years through to primary school years. For the latest baby clothes, maternity clothes, maternity accessories, toddler products, kids toys and kids clothing, breastfeeding and other parenting resources, check out Essential Baby and Essential Kids.