Julia Lamprey
February 2022
Julia
Lamprey
,
RM
Maternity Services
Leeds Teaching Hospitals Leeds General Infirmary
Leeds
,
West Yorkshire
United Kingdom

 

 

 

Somehow, we were with Julia for over an hour, but it felt like only moments. She made us feel like we could cope with what was happening.
"I am so sorry to tell you that there is something wrong with your baby." These are the words no one wants to hear at the first scan for their first baby. Excited to see our baby moving around on the screen, we hadn't thought it was odd that the sonographer had gone out of the room for a few minutes during our appointment. She explained that she had observed an abnormality on the scan and had gone to ring the Fetal Medicine Unit to tell them to expect us with them immediately. Our baby, she explained, had a very high nuchal translucency measurement, and this could have lots of different implications, some quite serious.

We were shepherded from radiology down to the FMU in a state of complete shock. Waiting for us there was Julia. She couldn't give us good news; what she could and did do was calmly and clearly explain what had been observed; that our baby had a nuchal translucency measurement >99th centile. The implications were a high chance of a chromosomal abnormality; a high chance of a congenital defect, such as a cardiac defect; and a high chance of fetal death before 20 weeks. However, she explained, none of these were certainties. "Your baby is putting up a little red flag that things might not be ok; it's asking us to take a closer look". She encouraged us to focus on the 15% chance (according to the patient information leaflet) that our baby would be born alive and well, and to remember that defects can be on a sliding scale, ranging from yes, the more serious, but also encompassing those where the affected person can live a very happy and fulfilled life. Somehow, we were with her for over an hour, but it felt like only moments. She made us feel like we could cope with what was happening.

The next week we were back for an enhanced scan with an FMU consultant. By this time we had had blood results back which suggested that there was a 1/3 chance that our baby had Down's syndrome. We were so relieved and happy to see Julia at this second appointment; it meant so much to have someone there we had already met, whom we knew we could talk to and ask questions of, and who carried with her such an air of calmness and capability. The news from this scan was more promising; while the consultant could see some abnormalities, he could not see anything very serious, although it was very early days. Julia then took my blood for further non-invasive testing. The results of this test drastically revised the estimated chance of Down's syndrome, although we were left with the possibility of other chromosomal abnormalities (but did not know for definite as we did not opt for invasive testing). Later scans at 20 weeks were also encouraging that the baby was developing well physiologically.

Fast-forward through a relatively tricky pregnancy with further worries in the third trimester (about fetal growth), an emergency Caesarean Section birth, and initial difficulties establishing feeding, leading to a stay in NICU and Transitional Care, where our baby was diagnosed with a minor cardiac defect, and we have never forgotten how much Julia helped us in those early days. The scan plunged us from innocent excitement into fear and uncertainty. Julia lifted us out from that initial despair - our first trial of parenting, not knowing if our tiny baby was ok - and set us on the path to becoming parents.