Alport Syndrome

Alport Syndrome and pregnancy

Pregnancy was discussed by people we interviewed particularly in relation to their choices about having children and the genetics of passing on Alport Syndrome. Dee described her pregnancies as perfectly normal but for others there were particular complications and problems. The main problems experienced during pregnancy were raised protein levels and blood in a woman’s urine and difficulties with high blood pressure and the potential for pre-eclampsia. Many women talked about having a lot of appointments and regular check-ups during pregnancy. Most women were advised to change their blood pressure medication should they become pregnant.
A few women did not have a diagnosis of Alport Syndrome before they got pregnant and were unaware of their condition. Jayne had been given a diagnosis of nephritis (inflamed kidneys) and towards the end of her pregnancy had to be induced because there were high levels of blood and protein in her urine. It was only later on when her son was 2 years old and had hearing loss that a diagnosis of Alport Syndrome was made. Michelle didn’t know she had Alport Syndrome when she was pregnant with her daughter and had to tell doctors that it was common in her family to have blood in their urine because this was all she was aware of at the time.
For those women who had a diagnosis of Alport Syndrome, some were told that their pregnancy was high risk and they had a risk of pre-eclampsia. Several women said that changes in their blood pressure and protein or blood in their urine were picked up at antenatal appointments and this sometimes worried health professionals.
Women with Alport Syndrome went through standard pregnancy tests from blood tests to anomaly scans. Most of the women we met had also been offered follow-up tests such as CVS (chorionic villus sampling) and amniocentesis to find out if the baby had genetic abnormalities. Debra for example, said that if her unborn baby boy had had Alport Syndrome she would have considered a termination. Some women explained the significance of finding out the sex of the baby. Diane and Neil were shocked when they found out their baby was a boy as they were convinced they were having a girl. Sammy spoke about having scans but unfortunately miscarrying several times, one time at 20 weeks. She was told this was probably due to her “weak kidneys”.
Others such as Lucy didn’t want to have more intrusive tests such as the CVS or amnio because of the risk of miscarriage.
Women had differing birthing experiences. Some were induced early before full term and some had caesarean sections. Women talked about their post-natal care and how they felt after giving birth. Frances said her son was given a DNA swab at birth to be tested for Alport Syndrome. Lucy wanted blood taken from the cord after the birth of her son as she wanted to test whether he had Alport Syndrome, but felt too knackered to “fight her corner” when doctors said it was 3am and they weren’t sure which test needed doing.
Women were often told to resume their blood pressure medication after the birth of their child. Some felt that they didn’t want to be on medication while breastfeeding.
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Some women talked about having more children after their first child. Angela said she left it three years between her first and second child because she wanted her kidney to recover. Some were weighing up whether they would want to have a natural conception in the future.
Women said that they felt most supported during their pregnancy when a doctor or nurse had taken the time to understand Alport Syndrome and they were not treated as a “generic case”.

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