Kerry
Hi and welcome! My name is Kerry and I am a 32 year old mother of 3. I had my oldest daughter when I was 24. I was off-diet when I found out I was pregnant, and pretty freaked out. I knew, at least, that I had to be on diet. So, I called the nearest clinic and scheduled an appointment. Once I made clear that I had PKU and was pregnant, I was given an immediate appointment. My doctor was wonderful and patient, and went above and beyond to help me get my levels in control. Erin was born full-term and is a healthy, happy seven-year-old today. Later that year, I joined the "big list," a PKU listserv that had PKU patients, parents, doctors and dieticians on it. It was amazing to me how much "closer" the PKU community was with the use of the internet, compared to when I was a kid. While a member of that list, I became pregnant for the second time, and put out an email about PKU and pregnancy. A woman named Stephanie responded. She, too, was pregnant, this time with her third. We compared notes on diet, bloodwork, different formulas, and, of course, general pregnancy woes. After emailing back and forth for a few weeks, Stephanie had a thought. "If you and I are having these questions and thoughts, don't you think there are others out there who do, too?" It made sense. And so, together, we started a Maternal PKU listserv, specifically for women with PKU who were pregnant, or thinking about starting a family, or even done having their children, but willing to offer words of wisdom to those who were where they had been. We started with about 8 women. In five years, we had broke 100 members. It was wonderful to me to be able to support other women who were out there with PKU, especially since I had always felt so alone. I subsequently lost my second child and third, in that first year of the listserv, to a brain malformation not related to the PKU. For a while, I was content, acting as a sounding board for others who were frustrated with their diet, or dealing with the baby blues. Finally, in 2008, with my levels in excellent control, I got pregnant again - with twins. I was scared - terrified, really - especially with what had happened in my last two pregnancies. I don't know that I would have been as optimistic as I was had it not been for the wonderful women on the listserv. Stephanie, of course, but (shout-out) Nicole and Jackie and Laryssa and a number of other wonderful women who I had met over the years, and become close to. It was a much different experience than my first pregnancy, when all I had to rely on was my clinic and my mother and her vague memory of my diet management. I love these women, and owe them my sanity! So, in January, 2009, Jack and Zoe were born, 2 days short of 36 weeks, in perfect health. Now, they are bouncy, loud 14 month olds, and my house is chaos. I wouldn't have it any other way. I remain active on the list, not posting so much now, but offering my ear when it's needed. Sometimes, being a good listener to someone is more than you realize.
Stephanie Coleman
Oct. 2001- Me and Michael 2 days postpartum
I always wanted to be a mother, ever since I was a little girl. With PKU I didn't know if that was possible as the Maternal PKU Collaborative Study was only a study at the time. I attended Maternal PKU Camp in Northridge and Sacramento every summer from the time I was 13 until I was 19. I learned all about having babies and how to prepare my body and my PKU diet in order to have a healthy, normal baby. I remember meeting pregnant women at the camp who would stay up late at night trying to eat Fritos and other higher phe foods, trying to get all their calories and phe in for the day. It was strange to see how much more phe that they ate than the rest of us. And to see that they could actually do this was such a huge reassurance to me that my dream to be a mother someday could come true. Jeff and I met and got married, and our premarriage plans involved a preconception visit with Dr. Koch and my dietitian Kathryn Moseley. They were integral in my healthy pregnancies and babies. Since that day in 2000, we have had six healthy beautiful children, and although I am biased, they are all intelligent and developmentally normal. They keep my life busy and crazy, but it is worth every moment with them. This is the life that I hoped and dreamed of. Life is challenging at times and pregnancy was anything but easy and I often was anxious and full of worry for my baby's health. But I learned how to navigate each pregnancy, to trust my body and intuition and to learn how to be flexible and easygoing with my diet and be willing to change if something wasn't working right. Finding the right formula sometimes was a challenge but once I found what worked, I stuck with it. I enjoyed the increase in phe tolerance and loved eating like a normal person towards the end of the pregnancy. I also loved feeling the baby moving inside of me most of all... feeling connected to this tiny little person that was inside of me. It was one of the most incredible feelings any woman can ever experience. Each time my baby's were born and I was able to hold them in my arms for the first time, there was always a sense of accomplishment and relief that they were here and healthy and that my hard work really paid off in the end! I would do it all over again in a heartbeat!
Jackie
Hello. I'm Jackie. Just Jackie, but I've had to say I'm Jackie and I have PKU in the past. It sounds so much like an AA meeting, and PKU doesn't define who I am. My love of outdoors, gymnastics, cardiac nursing and family do define me.The family living in my home is my husband, who I've known for 11 years, myself and our healthy, almost-two-year-old toddler, Claire.I suppose I should backtrack now to tell you about my family.After graduating college, I found a job in MA, 12 hours from my original home in PA. I was on diet at that time, after my one year "taken off" at 4-5 years of age. In order to continue the diet, I had to find a new clinic in MA. Fortunately, I found a great one and one year later I told them I was interested in getting married and having my phe levels 2-6 because we were "not going to do anything to prevent a pregnancy." I started doing weekly or every-other-week phe levels. Soon we found out it took 350mg less of phe (swap one french fry for my low protein noodles) in order to get my phe level from ten to five. I knew how important it was to have my phe level within the maternal PKU guidelines of 2-6 before becoming pregnant. For me, the best solution was to follow the maternal PKU diet and be off birth control at the time of marriage until the pleasant surprise of pregnancy happened.Three years later, that surprise still hadn't happened, and we yearned for it badly. I read all I could and we really started trying. A year after that, we went in for testing and fertility assistance. We found out, due to a male-sided issue, that we needed to do in vitro fertilization in order to conceive. I told my PKU clinic and I still recall them saying they did not know what all the infertility medications would do to my phe tolerance. Since this concerned me greatly, we developed a plan to do levels twice a week. My levels did fluctuate greatly, so I was very glad to be getting lots of feedback and the ability to make quick changes in my diet in order to keep my phe levels really close to the range they were supposed to be. I know how quickly prenatal development starts, often before most women know they are pregnant, so I wanted to give any baby the best nutrition from the start to prevent problems.Sadly, for us that dream of "as natural as possible" kinda had to be altered. We did, however, stick to our guns about no gene selection. We recall having a hard time deciding how many embryos to implant (yes, our fertility clinic did give us a choice). First IVF we let them put two in, which got me pregnant with twins that I carried for five months, then lost due to pre-term labor (not at all PKU or diet -related). We saw that as a sign from God, so, after that and some advice from our high-risk OB, we put in one embryo our next attempt. That got me pregnant with Claire.I think pregnancy in general is meant to be an educational experience. For me, I not only learned my baby's eating pattern, but I learned about PKU when mixed with maternal hyper-emesis (severe nausea/vomiting). I also learned how to completely alter my life and place family first. I could not have learned all I did without the knowledge and support of my fertility team, high-risk OB, PKU team, and friends I made from the maternal PKU listserv.
Nicole
Hi, my name is Nicole. I am 32 and have classical PKU. I can remember being told as a child and young adult that having children would not be an option for me because of PKU. When I met my husband at 17, I was terrified to let him know about PKU. He tells me I sat him down one day and said, "I have something to tell you," with much drama. He thought I was going to come out with some pretty outlandish things. When I said I have PKU, he was relieved.
However, when we did get married, we decided that we wanted to have children. I went back on diet and, after having to switch clinics, and with much difficulty, my levels were controlled after almost two years. While I was waiting to have controlled levels, my level dropped to below 1 for months. My hair began to fall our and my dietician could not figure out how to help me. She had me go off diet. Crazy, right! Well, I literally felt like I lost my mind. My count shot up and I felt like an alcoholic who had fallen off the wagon. I missed work for two days and said some things I am not proud of to my family. After begging to go back on diet, I switched doctors. Within six months, my new doctor had my levels under control and I was given the green light.
My pregnancy with Jayson was fairly uneventful. My levels stayed under control and my doctor monitored me closely. Of course, I had a few first time pregnancy scares (mistaking Braxton-Hicks for labor), but it went well. Jayson was born September 13, 2006, and was just perfect. He was everything I always dreamed my child would be but so much more. I was thrilled to find out he didn't have PKU and knew that if I could do this once, I could do it again.
Naturally, the temptation was there and I succumbed and went off diet in between pregnancies. Boy, did I enjoy the food I was missing! I knew I shouldn't be it eating it, but it was nice to go out to eat and order what I wanted.
It was not difficult to get back in control the second time around and we were blessed to get pregnant on the first try. Although my husband probably wished it took longer. This is where the trouble began.
I had bleeding at the end of my first trimester and was put on bedrest. My daughter was due in March, and, in January, I was put in the hospital overnight for heart decelerations and preterm labor. I was terrified; I cried. Interestingly enough, none of my problems had anything to do with PKU. I was going for iron infusions once a week (probably because I don't eat meat), and to the hospital for tests three times a week, but couldn't blame PKU for this. My daughter Kiley was born on March 18, 2009, and was found to have a short umbilical cord which could have choked her. Thankfully, she was fine.
The reason I am telling you all this is the realization that there are many things involved with a pregnancy and some of them are more serious than PKU. PKU was the last of my problems during my pregnancy with my daughter and that is something I never thought I would say. My levels stayed in control and I always followed the diet strictly, but, as it turned out, there were things at work that I never imagined. So that is my story. And with PKU comes some bumps during a pregnancy but those bumps don't have to be a roadblock. The support I had from my family made it possible to have my two beautiful children and I wouldn't change a things about what I needed to do to make their lives possible.
However, when we did get married, we decided that we wanted to have children. I went back on diet and, after having to switch clinics, and with much difficulty, my levels were controlled after almost two years. While I was waiting to have controlled levels, my level dropped to below 1 for months. My hair began to fall our and my dietician could not figure out how to help me. She had me go off diet. Crazy, right! Well, I literally felt like I lost my mind. My count shot up and I felt like an alcoholic who had fallen off the wagon. I missed work for two days and said some things I am not proud of to my family. After begging to go back on diet, I switched doctors. Within six months, my new doctor had my levels under control and I was given the green light.
My pregnancy with Jayson was fairly uneventful. My levels stayed under control and my doctor monitored me closely. Of course, I had a few first time pregnancy scares (mistaking Braxton-Hicks for labor), but it went well. Jayson was born September 13, 2006, and was just perfect. He was everything I always dreamed my child would be but so much more. I was thrilled to find out he didn't have PKU and knew that if I could do this once, I could do it again.
Naturally, the temptation was there and I succumbed and went off diet in between pregnancies. Boy, did I enjoy the food I was missing! I knew I shouldn't be it eating it, but it was nice to go out to eat and order what I wanted.
It was not difficult to get back in control the second time around and we were blessed to get pregnant on the first try. Although my husband probably wished it took longer. This is where the trouble began.
I had bleeding at the end of my first trimester and was put on bedrest. My daughter was due in March, and, in January, I was put in the hospital overnight for heart decelerations and preterm labor. I was terrified; I cried. Interestingly enough, none of my problems had anything to do with PKU. I was going for iron infusions once a week (probably because I don't eat meat), and to the hospital for tests three times a week, but couldn't blame PKU for this. My daughter Kiley was born on March 18, 2009, and was found to have a short umbilical cord which could have choked her. Thankfully, she was fine.
The reason I am telling you all this is the realization that there are many things involved with a pregnancy and some of them are more serious than PKU. PKU was the last of my problems during my pregnancy with my daughter and that is something I never thought I would say. My levels stayed in control and I always followed the diet strictly, but, as it turned out, there were things at work that I never imagined. So that is my story. And with PKU comes some bumps during a pregnancy but those bumps don't have to be a roadblock. The support I had from my family made it possible to have my two beautiful children and I wouldn't change a things about what I needed to do to make their lives possible.
