Our story is a bit of a long one, with recurrent pregnancy loss and complications. I’ve summarised it as best as I can but want to add whilst there is loss and trauma, there was (and is) so much support and love from our family and friends.
Maxx and I knew we always wanted children and shortly after we married, we decided to start trying for a baby. Once we got past the ‘WHATWEAREDOING’ stage we had a positive test, that disappeared nearly as quickly as it came. My big sister had just found out she was pregnant, and we had a brief, incredible moment of joy where we thought we would get to do this together.
Looking back, I feel so naive that this past version of us was just oblivious to everything that was to come.
From this point we would have 5 more positive tests and 5 more losses. There would be sobbing on a Friday afternoon as I was losing our second baby, because our hospital didn’t provide early pregnancy care at the weekend. There would tears as I was doubled up in pain, knowing the exact moment I passed the baby in the A and E toilets. There would be a surgical management where I cried because I felt guilty for taking the ‘easy’ way out. We would find out in the hospital lifts, on a bit of paper, that we lost a girl who had trisomy 13.
We cycled through specialists, all with different opinions on what would work and what was wrong with me.
Eventually we landed with the kindest doctor we met on this journey, she called our babies, babies. She acknowledged every loss and she listened. We found out we were pregnant shortly after seeing her, on a month where we weren’t planning to try . We started treatments as soon as we could but had our sixth loss. After this, our doctor recommended a treatment we hadn’t tried before, an immune modulating drug, it was added to the cocktail of treatments, and I took it for a few months before trying.
On the third month of trying, we had our 7th positive test, a tiny, barely there faint line on Easter Sunday. We held our breath as we reached milestones we had never seen before. A gestational sac measuring spot on for 4 weeks, a heartbeat at 6, a tiny movement in a scan at 8 weeks. We sensed he was a boy, and watched in amazement as he grew comparing each scan with the last.
An extra joy was that my younger sister was pregnant, and even though she was the other side of the world, we still got to do it together.
The pregnancy progressed well and as I weaned off the medications that got us here, I felt well and happy.
At around 23 weeks I started experiencing itching, focused initially on the soles of my feet, then my hands and then more widespread. I remembered a GP telling me in the first few days of my job, that itching in pregnancy was bad and at the next appointment (a few days later) I was tested for intrahepatic cholestasis of pregnancy. Some nights the itching was so intense I’d cry myself to sleep, but my tests came back normal, and the itching settled.
In the weeks that followed, I had two episodes of reduced movements (both where he immediately woke up when we reached the hospital) and this triggered an extra scan
During the scan they noticed extra amniotic fluid and that he was measuring big. I had an extra glucose tolerance test which picked up that I had developed gestational diabetes.
The hospital provided amazing support and with tips from Gestational Diabetes UK, and a bit of luck, I managed to stay diet controlled.
At about 33 weeks, the itching I had previously came back with a vengeance and my bile acid concentrations had risen. I was diagnosed with mild ICP and we opted for a c-section at 38 weeks.
Whilst waiting for d-day to approach, I was having twice weekly tests and my bile acid concentrations went into the severe range at 36 weeks.
At this point I spiraled a bit, as once concentrations reach the severe range, the risk of still birth increases, but there is no way of knowing which babies will be affected. Research recommends delivery at 35 weeks if levels are in the severe range. The hospital initially told me to come in two days later as planned, but I knew this wasn’t safe or correct.
When the itching had first started, I sought advice from the charity ICP Support, who are the leading organisation for ICP. From their support group, I was able to advocate for myself and our son, I quoted the research and the guidelines and was admitted that night.
Knowing what we know now, I would have pushed for delivery that night, but he is here and safe and we can focus on the joy he brings us rather than the ‘what-ifs’.
Dustin was born by c-section on St Andrew’s Day at 36+5.
Without ICP Support I think the risks would have been so much higher and I am so grateful for how they, (particularly their founder) helped get Dustin here safely.
Photos taken by Clare Long Photography.
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