Guide to PKU - Mead Johnson Nutrition

Questions Parents Often AskDid something happen duringmy pregnancy that could havecaused my baby to be bornwith PKU?No. PKU is inherited fromboth parents. Only when theuniting sperm and egg bothcontain the gene for PKU willthe baby develop this condition.How can you tell who is acarrier of PKU?When a child is born with PKU,we know that both parents are carriersfor the altered PKU gene.Consult with your genetic counselorabout determining who else inyour families may be carriers.Siblings of a child with PKUhave a 50% chance of being carriersfor PKU. Therefore, they maywant to have carrier testing doneon themselves before they begin afamily. If they know they are carriersof PKU but are unsure of thePKU status of their spouses, theywill want to be certain that earlyscreening is done on any childrenthey may have.If we have one child with PKU,how will this affect the possibilityof having future children withPKU?When both parents are carriersfor the altered gene, there is a onein four chance with each pregnancythat PKU will occur. Therefore,you have a 25% chance of havinga baby with PKU each time youare pregnant.How many people in the generalpopulation are carriers of PKU?One in 50 to one in 70. Thisnumber is slightly higher in somepopulations and lower in others.Every person carries several geneswhich, like the PKU gene, cancause a variety of inherited disorders.Carriers for the altered PKUgene are not different from thegeneral population nor do theyhave any abnormalities resultingfrom being a carrier.What will happen to my childwith PKU when she marriesand has children?If the father is a carrier for thealtered PKU gene, a child theyhave would have a 50% chance ofhaving PKU. If the father is nota carrier, none of their childrenwould have PKU, but all childrenwould be carriers.What is “Maternal PKU?”This is the term given to thespecial problems that can occurwhen a woman with PKU haschildren. Women with PKU needto understand that if they becomepregnant when their blood phenylalaninelevels are high, there is agreater chance the baby may beborn with birth defects or developmentaldelays. Being on a very lowphenylalanine diet prior to conceptionand throughout pregnancyreduces the risk of these problems.If we have a child with PKU inthe family, how will this affectthe lives of our other children?Having a child with specialhealth needs causes some changesin attitudes and family routine.For example, eating habits mayhave to be adjusted, and the childwith PKU may seem to get moreattention than the childrenwithout PKU. Parents have to be16