There are so many layers to grief, loss and the guilt that we carry with it. The circumstances around a loss can really shape this for many parents. In Kimberley’s story about the death of her son Arlo-Jorg, we here about how it feels to have lost a baby following an amniocentesis – a procedure that carries a risk of miscarriage. She also talks about the impact of her son being classified as second trimester miscarriage – feelings that I know many others will relate to.
Please welcome Kimberley and Arlo-Jorg to the Diversity in Loss series…
The baby loss community is such an amazing community. So many inspiring, strong parents. So many creating legacies for their babies. Its truly incredible. But I often feel alone, the only reason we have for Arlo-Jorg’s death is because of a decision we made. A decision to have a amniocentesis.
At our 12 week scan with Arlo-Jorg, we were more concerned there would be no heartbeat as several months earlier we had experienced a missed miscarriage so we definitely were on edge. The heartbeat was confirmed and we was so relieved. Only moments later did we here the words “I’m so sorry, there is something wrong with baby”. We discovered Arlo-Jorg had a cystic hygroma. A cystic hygroma is high level of fluid behind baby’s neck. Arlo-Jorg’s reached from the front of his face all the way down to his bum. The consultant then informed us that baby’s chance of survival was slim. The cystic hygroma was most likely caused by a chromosome defect. The four most likely were Down’s Syndrome, Edward’s Syndrome, Patau syndrome or Noonan/Turner’s Syndrome.
We didn’t know a lot about these syndromes other than some meant that baby would survive. We were told the cystic hygroma was life threatening to the baby and the pregnancy could end at any point spontaneously. We were advised a CVS or amniocentesis would be best so that we knew what was going on with baby. We followed the consultants advice, no matter the result we would of carried on with the pregnancy, we loved our little baby so much already. We just wanted to be prepared for worse case scenario. Looking back I often think, ‘was that selfish of us?’
We tried for a CVS at 13 and 14 weeks, both times the placenta was in the wrong place for the procedure to be safe, but each time the consultant would confirm baby was growing nicely, nothing of concern was seen on the scan. We then decided to book in for a amniocentesis instead which would be done the day after we got back from our holiday. We had a gender scan at 16 weeks, it was such a lovely experience seeing him and being told everything looks fine. At 18+4 weeks we had the amniocentesis. We were told 1 in 200 women miscarry due to the procedure. I didn’t think we would become the 1 in 200. I was an emotional wreck the whole time. I sobbed through the whole procedure. It didn’t hurt and was simple enough and was done in 10 minute. A small sample of amniotic fluid collected. The procedure had gone well. No problems.
The next day we had a call. There were no chromosome defects. We were so happy. We were told baby’s survival rates were now a lot higher and we just had to wait for our 20 week scan to be sure all was fine.
That evening the pains started. Just the odd pain every now and again.
Wednesday 24th October 2018 at 18+6 weeks the pains became a lot worse. We went to the hospital. We were sent for a viability scan at 2.30pm and there was our sweet boy kicking around, heart beating. The sonographer said ‘looking perfectly healthy’. At 4pm I was sent home – most likely just a urine infection causing the pain. The pains got worse and at 7.30pm we made it back just in time to hospital, where Arlo-Jorg was delivered just outside the doors.
Medically I had suffered a second trimester loss, but to me I birthed our sleeping baby boy. I contracted, I felt every pain, my waters broke, the umbilical cord was cut and I delivered a placenta. I held our little boy in my arms, I kissed his little button nose and dressed him in the smallest outfit. It can be very isolating knowing Arlo-Jorg is not acknowledged as a baby because of the gestation he was born.
Nine weeks later we met with the consultant to discuss Arlo-Jorg’s death. He was perfectly healthy and the only reason for his death was the amniocentesis causing a miscarriage. A procedure we chose to have. A guilt I’ll carry for ever. I just never thought it would happen to me.
He may have been born early and been tiny but he has left a massive hole in our lifes.
Arlo-Jorg we will always love you.