PKU patient preparing for motherhood

PKU patient preparing for motherhood

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PKU patient preparing for motherhood

November 14, 2010 in Uncategorized

Hi All, I have PKU and my husband and I have recently decided we are going to prepare to start a family. My doctors have told me I need to start preparing six months in advance, but I feel extra cautious about this and we have decided a year out is the proper time for me to start preparing to carry a child. It makes me super nervous, no joke, I have even thought about asking one of my sisters to be a surrogate for me as it scares me so much. I feel a lot of pressure and responsibility at the thought of carrying a child. I have a great support team of Doctors here at CHKD. I took Phenyl-Free Formula for years, and I have been on Kuvan only since 2008. I have to admit that i hate Kuvan, I am on 18 pills a day and I do not take it often b/c it upsets my digestive track so much; even if I stick with it for weeks the digestive problems do not go away, however, I respond great to it. My old doctors told me not to EVER take Kuvan while I was pregant, and I agree with that, but my new doctors at CHKD have told me that the benefits of Kuvan out-weigh the risks. I have a lot of questions about this process and I do not know another PKU mom who has gone through this successfully. I have three big questions to start with: 1) Has anyone taken Kuvan throughout their pregancy and had positive outcomes? 2) Was it difficult to find an OB-GYN to work with as I would assume you would need to have an OB-GYN in the know about PKU? and Is it considered a high-risk pregnancy 3) What was the biggest challenge you faced having PKU and being pregnant? How far in advance did you start preparing? Thanks for your help! Jenni

12 Reviews of PKU patient preparing for motherhood

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Hi Jenni,
    My name is Katie and I am 26 with PKU….I’ve been on Kuvan quite a few years myself… I am unable to answer your questions since I am not ready to have children, although I do know that there have been some women who have gone through maternity while on Kuvan and had positive outcomes. In the beginning of Kuvan, it was definitely suggested not to carry while taking Kuvan. Over the past few years, they have been able to track some women who have been on Kuvan while pregnant. As far as I know, there have been no negative results. Therefore, many doctors are now saying Kuvan and pregnancy are okay.

    I look forward to hearing more about your journey, and I am sure you will find people on here who can answer your questions for you from personal experiences. Best of luck to you and your husband with starting your family.

    and one more thing… don’t be scared! You will be an awesome mother :)


  2. Registered: Apr 24, 2007

    Posts: 0

    Norfolk, Virginia

    Thank you for your kind words! That is very interesting and I will look into it more! I will keep you posted on my journey!

  3. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    I look forward to it :)

  4. Registered: Nov 4, 2010

    Posts: 0

    mill park, INTERNATIONAL

    Hi jen
    im a 37 year old PKU mother of two health boys one 13 the other 10 i have been off my diet since i was 12 when i was having my first son the dr told me i needed to be on my diet with my eldest i was on my diet for the first three months and very sick my husband and i made the choice to go back of the diet i had a normal 30 min labour with my first and a 2 hour labour with my second i am in no way saying this is what you should do but dont think drs know alot about out conditon i only had a normal dr also please feel free to send me a message i found this web site and for once in my life dont feel like im the only one in the world with this

  5. Registered: Apr 24, 2007

    Posts: 0

    Norfolk, Virginia

    Hello Joanne, Thank you for sharing your experiences with me! It is interesting to hear a different experience. I don’t think I would be brave enough to ever try not being on diet while I was pregnant. I am happy it worked out for you!

  6. Registered: Jun 27, 2009

    Posts: 0

    , New York

    I am just a parent, so I cannot answer your questions, but know that there is a Maternal PKU List-Serv and website that offers support. The link is

    Hope it helps and best of luck,

  7. Registered: Jun 11, 2010

    Posts: 0

    Sittingbourne, INTERNATIONAL

    Hello! I am sorry I cannot help you with your questions either. But I am 3months pregnant.

    I was on diet for just 3months before my dietician told me I could start trying! I was very excited, and fell straight away. I am taking suppliment and on just 2exchanges a day. I wont pretend it is easy, it is really hard!

    Obviously I do not know yet if my child is healthy and happy but the first scan all went well, so I am hopeful. Every now and then my levels seem to shoot up, but my dietician is working very closely with me. When they do go up, it is VERY worrying. All I can tell myself though is that I am trying my best and every thing SEEMED fine on the scan. Stressing will only make the baby worse! It’s in there now, and it’s what I want, so I just pray every day that it will all be ok!

    If you ever want to talk or ask anything though, feel free to add as a friend and/or message me!!

    Hope to hear more of how you are doing soon! x x

  8. Registered: Apr 24, 2007

    Posts: 0

    Norfolk, Virginia

    Thanks Becky! I am so excited for you! Keep me posted on how everything is going and I will let you know how it goes for me too! My co-worker recommends Pregnancy Yoga for stress and the physical ailments you go through with pregnancy (she had a pinched sciatic nerve for awhile). I imagine it is hard to stop worrying, maybe the yoga would help? She had it at the hospital her OBGYN was at.

  9. Registered: Oct 26, 2010

    Posts: 0


    Hi Jenny

    Well i have never been on that Kuvan, i honestly have never even heard of it lol But i have had 2 boys who r now 8 and 6 and i am expecting again now i am 14 weeks. I didnt know i was pregnant with my first 2 until i was 8 weeks plus but this time round i have prepared and i started my pre pregnancy diet the end of June beginning of July and i fell pregnant the end of August. My levels were great ranging between 200-230 and so my dietitian and consultant were happy for me 2 continue with the pregnancy.

    I am on 3 exchanges but i was on 7 but my levels went up and so they took me down 2 the 3 i have now i am hoping 2 have them go up 2 4 2day (26/11/2010) as my dietitian will be calling with my blood results and if there still low then i get an exchange back!!! Whooo!!! lol

    It is hard and at times u just break down and cry cos all u want is a decent meal but then u just think of that bundle of joy u will have at the end of it all! And i know 4 some it isn’t but 4 me being pregnant is the most amazing thing ever, i love it!! lol

    It is also such a pain having 2 go 4 bloods twice a week and clinic once a month, then u have ur normal anti natal appointments but also i have fetal monitoring scan appointments as well it’s a hell of alot but im not sure if they would do that in all hospitals.

    When having my first i didnt have a clue what i needed 2 do and i was only 18 and so i was admitted in2 hospital the day after i found out i was pregnant and i ended up stayin in 4 the rest of the pregnancy, i was 8 weeks and 6 days when i found out i was pregnant and i was in till the day he was born!

    I would never advise not doing diet during pregnancy no matter how hard it got, as both my boys were born with medical problems due 2 my lack of diet just in those first 8 weeks.

    However i do know of a pku woman who is 30 weeks pregnant and she is eating chicken and all kinds as she has enough exchanges she is on 24 a day!! I focus on getting 2 that point, u see as the baby grows inside of u the baby needs more and so u need 2 eat more protien 4 the baby but obviously with in moderation and as long as ur levels r kept steady!

    Well i hope i have helped in some way if u wanna msg me or add me plz do and ask me anythin im happy 2 help in anyway i can ok. Sorry if i’ve rabbited on abit lol

    Speak soon and i hope all works out and im sure if i can do it after 10+ years off diet and go back on the diet and do as good as i am im sure u could!!! I have every faith in u if u want somethin bad enough u’ll do whatever it takes 2 get it!

    Good luck and plz keep on touch!

    Lou x

  10. Registered: Jun 11, 2010

    Posts: 0

    Sittingbourne, INTERNATIONAL

    Just adding to what Louise said. I thought I would give you a bit more info on my pregnancy! I have to do a blood test with a home kit and send it off to a laboratory in London 3 times a week. I do not have to go to a clinic for my blood tests like Louise does!
    I had an appointment at my PKU clinic in London last Friday which was the first time in my pregnancy and I was about 13, nearly 14 weeks pregnant. I have to go back to London on the 10th January for my 20 week scan. Then I have another one at my local hospital at 22 weeks. The scan on the 10th Jan is the only additional scan I will have in comparison to a woman without PKU. But everyone’s pregnancy is different and different clinics have different ways of doing things! I know a laydee that had a scan every 2weeks with PKU so it all depends on you and your clinic!
    I will agree with Louise that when on diet I can watch my partner eating a pizza and ONCE I have just broke down in tears sayin “I want soommmeee ppiiiiiiizzzzaaaaaaaaaa!” lol but I think that was more to do with my hormones because touch wood, I haven’t been in such a bad way about food that I have cried since!
    I was off diet for 6years before I went onto preconception diet and it IS hard, but I’m surprised how quickly I got back into the routine of looking at all the labels and thinking “no I’m not allowed that!”
    I hope to hear more from you soon! x

  11. Registered: Apr 24, 2007

    Posts: 0

    Norfolk, Virginia

    Thank you Louise and Becky,

    Both of your accounts are very informational. I can totally imagine myself breaking down in tears b/c I couldn’t eat something too, but I also agree I would just think of the baby and be able to calm myself down.

    I have frequently heard PKU people in Europe saying they haven’t heard of Kuvan which surprises me b/c in the states we frequently hear “in Europe they have been using it for years”. I wonder if it is called something different and I just don’t know it. I know the actual scientific name is Sapropterin.

    I wish you both the best of luck! I hope to hear more from you soon and I will most soon too! Thank you!


  12. Registered: Oct 13, 2007

    Posts: 0

    canton, Ohio

    jenn I was on kuvan during my first pregnancy and I beleive that everyone should be on kuvan while pregnant. I had a perfect healthy little girl and before I was put on the kuvan I was 3 months and things were not looking so good. After getting on the kuvan my levels were great! There were no side effects for me I take 15 pills a day. I did not take kuvan during my 2nd pregnancy and I lost my son and my levels were crazy. I also did not have care around here either. anywho if u have anymore questions let me know I was one of the trial people for kuvan while pregnant.

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