Pregnancy with KC

[helenf]

I'm a 31 yr old female and have had KC diagnosed for around 8 years now. I use hard contacts (which drive me crazy) and glasses. My husband and I are thinking of trying for a baby and I've been to the docs to check out any problems from my medications for asthma and eczema etc, but no one seems able to tell me if there may be any implications for my KC. Has anyone else had this experience?

I'm also worried about how I'd cope with my KC, work and a baby but hey, people cope with much worse dont they.....

Helen

[space_cadet]

Helen, I was about to post on exactly this topic. So in a way you have saved me from doing so.

I have read some articles saying KC is genetic and others saying it isn't.

I am currently on the waiting list for a graft for my right eye - which I believe will have to be done under a general anesthetic - which is dangerous for baby, and having the joys of fun and games of trying to start to find hard lenses for my left eye, although I have been told that also needs a graft but right eye is the priority.

With you in solidarity with this. and if you wanna chat at all feel able to Private Message me,

Lea
xox

[Lynn White]

Hi Both

No-one can tell you for sure about KC and pregnancy because no-one knows for sure. As I replied on another thread - professionals can only give you definitive answers when there has been a proper study on the subject. The study simply has not been done. There was a big study on KC in the US several years ago - the CLEK study - but there were not enough pregnant women in the study to be able to draw any conclusions. Its also a difficult thing to do in a study. You would have to recruit a group of non pregnant females and ones who thought they were going to become pregnant or had just had a check up before they got pregnant, so that baseline information could be gathered on both. The two groups would have to be broadly similar in KC types and age of onset etc so that normal progression rates could be compared. There are actually so many variables here (contact lens types, length of time wearing contacts, etc etc) that it would be difficult to absolutely sure.

Gut feeling is that as KC tends to progress more when hormones are overly active (eg puberty) and slow down when not (menopause, ageing etc) that it may have an effect but my experience is that patients differ and you can't really generalise. Professor Zadnik who was involved with CLEK mentions it is a recent online article http://optometrytimes.modernmedicine.com/optometrytimes/Modern+Medicine+Now/Keratoconus-counseling-insights-offered-with-the-C/ArticleStandard/Article/detail/627299?contextCategoryId=48141&ref=25

Experience again shows me that many mothers, KC or not, simply give up wear of lenses when the baby is young, simply because its too much effort to put them in! On the other hand, if your RGPs drive you crazy, then try soft lenses for KC as, if they are prescribed in high water content materials, they can be worn comfortably for most of the day. if those don't suit, then semi sclerals or sclerals may help - there are many other lens types out there!

Genetics: I think personally there is plenty of evidence now to show that KC has genetic links but maybe is not the whole picture. I certainly have many patients who have siblings or children with KC and others who do not.

Good luck

Lynn

[space_cadet]

Lynn thanks for the link to that article when my concentration span decides to be unlocked by anti freeze which I hope will be later this evening will read it. Brain isn't wanting to work at the moment for some reason

Lea
xox

[Andrew MacLean]

Helenf

good question! My gut reaction would be the same as Lynn's: pregnancy may actually be a benefit to your KC.

About the nature/nurture debate as it relates to KC, Id not put my plans on hold waiting for that to be resolved.

All the best.

Andrew

[Lia Williams]

My children are now teenagers but I did worry about how pregnancy and childbirth was going to affect my KC. I remember my biggest worry was that a pregnancy and childbirth book stated that contact lenses should be removed during labour and preferably before going to hospital. This really worried me as I can see so little without my lenses and did not want the memory of my baby’s birth to be a blur. I was also worried about being in a strange place and not being able to find my way around.
I couldn’t understand why lenses should be removed for the birth so I ignored this advice! I wore my lenses for the birth of both children.

With the first child I was in and out of hospital the same day so not wearing my lenses wasn’t an issue. My second child was born in the evening which meant I had to stay in overnight. As I knew I’d get very little sleep that night with my new born (and all the other babies in the ward!) I wore one lens for half the night and the other for the other half and just admired me new born son.

I can’t remember any changes in my vision during pregnancy. As far as I remember wearing contact lens wear time, comfort and vision were unchanged.

Lia

[Libby]

Hi there,

My two daughters and 19 and 18 years old and I cannot remember having any difficulties with my KC throughout either pregnancy. I wore the lenses throughout each pregnancy and thro their baby years as glasses were not an option for me.

In those days nobody ever informed me that my KC could be affected by pregnancy - and as the say ignorance is bliss.

Regards
Libby

[helenf]

thanks for all the responses, backed up what I thought really - You just cant tell!!

Had an appt with my GP today who also said, as with my other pre existing conditions, it could stay the same, get worse or get better!

Its comfort to know that others have gone through this and come out the other side, I suppose I need to just put it to the back of my mind and see what happens.

Just one other thing.....I have constant problems with my contacts and see a contact lens specialist at my local outpatients but dont think they have a KC specialist. To be frank, I just dont know if I'm getting the best support from my local hospital and have seen an Optometrist on your list of KC friendly practices, but am confused as to whether I can go and make a private appt (and what i should expect it to cost etc) or need to go through my GP. I havent seen an optometrist for my KC since I was diagnosed 8 years ago - is this how it should be??

Confused and a bit stressed,

Helen

[Andrew MacLean]

I am absolutely sure that is not the way it should be. In your place Id phone the ophthalmology clinic and ask for an early appointment.

Ask the ophthalmologist directly about KC and pregnancy AND ask for an optometry referral. The hospital may have their own clinic or they may refer patients under contract to a high street optom.

All the best.

Andrew

[GarethB]

Helen

The people I know who have gone private called the optom from the list and asked a range of questions to guage their knowledge of KC before asking how much a consultaion would cost. As far as the cost of lenses would depend on what type you were offered privatly.

I am being made aware of more cases where people are getting lenses fitted privatly and go for their next routing hospital appointment with their privatly supplied lenses and the hospital then takes on the after care so to some extent you get the best of both worlds.

Some hospitals if you do as Andrew says will get in new types of lenses they wouldn't normally offer and try them at your request.

Hope this helps.

Gareth