here - Little Hearts Matter

MedicalThe article below looks at the emotional rollercoaster of futurepregnancies after having gone through the diagnosis ofhaving a child with a single ventricle heart condition.If you have had a child affected by acomplex heart problem, the thought offuture pregnancies will inevitably be ascary prospect. Making the decisionwhether to try again is a complex one,coloured by the painful memories ofwhat happened in the previouspregnancy or at birth when thediagnosis of a cardiac defect wasmade.For those parents who chose to endthe pregnancy or whose baby diedafter birth or whilst undergoingtreatment, there can be a conflictbetween treasuring the memories ofthe baby who died and the hopes ofhaving a healthy child.Although we know from researchand experience that if you have had achild with a congenital heart defect,there is a small increased risk in futurepregnancies, by far the most likelyoutcome is that you will have a childwith a normal heart.Your own individual recurrence riskwill be given to you by your medicalteam, but the range could be anythingfrom 2-3% to 9-10%. The factorsinfluencing this include the exact natureof the condition your previous child hadOur StoryWritten byRuth Kirchmeier, Birmingham Women's HospitalSherrida Rollings, Guy's and St Thomasand your individual family background.However it may help to bear in mindthat even if the recurrence risk is 10%, itmeans that you have a 90% chance ofyour baby's heart being normal nexttime, and even if there is a problem itwould not necessarily be the same, oras severe, as your previous child.Whilst statistics such as these aregiven to reassure you and help youmake plans for the future, we knowthat when you have had a child with acongenital heart condition, it is hard tobelieve that it will not happen again.Preconception CareMost parents will want to know if thereis anything they can do to reduce therisk of recurrence. Whilst as yet, thecauses of single ventricle heart diseaseare not known there are a few simplethings that parents can do to keepthemselves healthy and therefore givetheir baby the best chance.Eat a good balanced diet includingfoods rich in Folic Acid, e.g. fruits,green leafy vegetables, lentils,chickpeas, some cereals and bread.Cut down on the intake of caffeine toreduce the risk of miscarriage.Reduce and if possible stop smokingprior to conception. Smoking can affectthe fertility of both men and womenand may mean it takes longer toconceive.Reduce and if possible stop drinkingalcohol prior to conception. Alcohol toocan affect both men's and women'sfertility.Take 400 micrograms of Folic Acidonce a day ideally for three monthsprior to conception and for the firsttwelve weeks of the pregnancy. This isthought to reduce the risks of neuraltube defects such as spina bifida.Exercise regularly to maintain areasonable level of fitness.Facing the emotional impact of afurther pregnancyNo one can take away the anxietywhich the thought of a future pregnancybrings.Sometimes it might be helpful forparents to see their obstetrican or GPprior to embarking on a pregnancy, totalk through some of the issuessurrounding how a subsequentpregnancy would be managed andwhat support could be given. For someparents, making a decision to try againcan be helped by talking to otherparents who have had an affectedchild and who have had a furthersuccessful pregnancy. Little HeartsMatter can put parents in touch withone another and these contacts can bevaluable sources of support both priorand during a pregnancy.The booking scanThe booking scan, usually carried outby about 12 weeks of pregnancy, willhopefully be a positive affirmation thatso far all is well and the first hurdle ofearly miscarriage is past. Seeing thebaby on the screen can bring a mixtureof emotions as hopes and aspirationsfor this new baby combine withmemories of scans in the previouspregnancy.Further routine screening tests willbe offered to look for the risk of Down's6Lynne and Caryshad always wanted three children butI after our second daughter, Carys,was born with a single ventriclecondition, I started to think it wouldnever happen. To start with, there wasso much else to think and worry about.I wanted to get her three operationsover with before thinking about gettingpregnant again. I did not want to becoping with a pregnancy at the sametime as a big op. We were expectingthe Fontan at about three years old butin the end she was nearly five beforehaving it.Then there was the risk of ithappening again – it was hard to trustin my body’s ability to nurture andgrow a healthy baby (even though Ihad managed it once with Hannah). Ihad times when I was focused on thestatistical risk (which was fairly small)but other times (often in the wee smallhours) when I was terrified of the riskwe might be taking with this as yet notconceived new person.Over the years we had had supportfrom the medical team – we had visitedthe fetal medicine specialist to get anassessment of our risk factors whenCarys was two or three and this hadbeen a very useful session (althoughvery uncomfortable being back in theunit where Carys’ problems were firstdiagnosed).It finally took us over seven years tomake the decision to try for anotherbaby. Once the blue line appeared wethen entered an anxious nine monthswait. The local obstetricians were verysupportive – the doc who did ourgenetic testing in early pregnancy alsothrew in a quick nuchal translucency