Hi. My name is Sue Roper-Moore and my husband is Malcolm. We live in Birmingham and have a five year old son, Henry, and identical twin girls – Mary and Lydia – who will be 3 in October. This is our recollection of Twin-to-Twin Transfusion.
I had a trouble free ‘ text book ‘ pregnancy with Henry and when I discovered that I was pregnant again me, my husband, my doctor, my midwife and family had no reason to suspect anything untoward. However, at 14 weeks I had severe stomach cramps and was sent for an emergency scan – hey-ho we discovered it was twins!! Considering there are no twins in either family this came as a bit of a shock. Fortunately, I was seen by an expert sonographer who noticed a discrepancy in amniotic fluid and I was referred to St Mary’s Hospital in Manchester.
It was there, at 16 weeks, that TTTS was diagnosed. My pregnancy was a monchorionic, diamniotic twin pregnancy and I was warned that this was very early in the pregnancy for either foetus to survive – there was 11cm of fluid around one baby and only 2cm around the other. During the next eight weeks my husband and I tried to find as much information as possible about the condition but the survival statistics did not make encouraging reading and we found it very difficult to find / meet/ talk to people who had endured the same torture.
I was scanned every 72hrs at St Mary’s and was amazed at the variation in fluid around the babies. However, still no-one gave us much hope. At 24 weeks I was prescribed steroids to promote the lung development in the babies in case of an emergency birth and at 28 weeks I was hospitalised with pre-eclampsia. During this time, my weight increased by 8 stone and my waistline was a svelte 58 inches and not surprisingly, my pelvis collapsed under the pressure !
I managed to hold on until 32 weeks when our girls were born via C-section. They were in NICU for 6 weeks and then had to undergo tests over the next 12 months on their hearts, livers, kidneys, brains ears etc. to determine whether they had beaten the odds – they had, all of the tests came back perfect. However, I suffered (or am still suffering) post natal depression and post traumatic stress although I am now well on the road to recovery (hence being able to talk about what happened). I would like to try and promote awareness of the condition, but more importantly my husband and I would like to promote the fact that there is always hope, the odds can be beaten and we have two beautiful, perfect girls to prove this.
Sue, Malcolm, Henry, Mary and Lydia.