Wednesday was our scan day, and from the minute we woke up it just felt different. Both of us were quietly optimistic. The sun was shining, Junebug kicked me awake at 5.30am—the foreboding greyness that had hung in the air at our last scan just didn’t seem to be there. We did a LOT of singing around the house, both did a little bit of work, and tried to stay upbeat.

The team at Tsan Yuk Hospital were their usual warm and kind selves, with the doctor immediately asking how we were as we arrived. We overheard another pregnant patient talking about how her husband couldn’t be there for a follow-up scan that day and that he had issues getting away from work and wouldn’t be able to come until the following week—she was nervous and unsettled and I was reminded how lucky we are that Erin’s workplace is understanding enough to let him be with me at every one of these important appointments.

The doctor started measuring and neither of us held our breaths like we usually do, we just let ourselves be in total awe of our baby. As leg and arm bones came in and out of focus on the screen, she measured. Then the heart with its beautiful, beautiful beat, pulsed into focus and we knew she was measuring thoracic circumference, so we held hands a tiny bit tighter.

We sat down to go through all results with the doctor and were overjoyed to find out that Junebug is still growing! Slowly, but still growing! Chest, legs and arms are still tracking behind—the femurs are lagging the most at over 6 weeks behind gestational age, but there was GROWTH. In three weeks, most bits and pieces that were growing slowly had only grown around 2 weeks’ worth, but we were so, so happy to see it. The chest shape was also normal, no bell-shape. We had seen on the ultrasound Junebug opening and closing their mouth as they practiced swallowing, which was fantastic because one concern that we’d had was that a restricted chest could impact how the baby swallows amniotic fluid, leading to polyhydramnios (too much amniotic fluid). But this was all normal, too.

We’re not expecting some sort of miracle growth spurt where all limbs catch up, it’s beyond that point, but we root for any growth because it can affect the ratios. Last scan, Junebug’s abdominal circumference to femur length (AC to FL) was 0.15, under the 0.16 that is a strong indicator of lethality—this time it was 0.168, a fraction in the right direction (!). Thoracic circumference to abdominal circumference (TC to AC) was 0.84, right on the borderline of lethality, too, but a smidgen over. I wrote these down with a pen on Erin’s hands—he said it made him feel closer to Junebug to hold those little digits with hope.

The doctor mentioned she had spoken to the clinical geneticist on our behalf. Hong Kong only has two and they are SO BUSY, so we were so grateful our case had been discussed. He had recommended us a new test, exome genetic sequencing, to try and shine some more light on a potential diagnosis. We hadn’t been offered this at my original amniocentesis as results can take weeks and weeks, and we wouldn’t have received them in time to make any decisions before the 24-week termination cut-off date. Now, we have plenty of time. We were given consent forms to sign to do the testing as part of a four-year study about rare and orphan diseases at Hong Kong University, free of charge, results will take around 8 weeks. While there’s no treatment I could ever receive while pregnant that would change Junebug’s outcome, finding a diagnosis may help us to prepare better for what might happen.

We also talked to the doctor about how I’ll be having Junebug in New Zealand—and how that was in no way a response to the quality of expertise or care we’d received. I really can’t stress enough how fortunate we feel to be cared for in a free healthcare system. This opened the conversation up to a fascinating chat where the doctor shared with us how difficult it is to study these sorts of conditions in Hong Kong because often (not always) parents choose termination when faced with prenatal diagnosis—but not always out of despair, sometimes just out of lack of understanding. This made us even more resolute that whatever happens for Junebug, we are more than willing to share details of their condition and test results, in the hopes it can benefit any other babies and families facing this experience in the future. In Hong Kong, 1 in 2000 people face an orphan (rare) disease.

With those tiny nudges in the right direction, we felt good. I said to Erin as we left, “We’re not out of the woods yet, everything is still borderline.” He replied, “Cruzie, none of us are out of the woods until we die.” Which is true. Whatever happens next, we are holding onto hope.

Next time we get a peek at Junebug will be in New Zealand in 2 or 3 weeks.

An incredibly brave and kind pregnant friend in the midst of her own challenges right now, shared a song with us the day before the scan. The chorus repeats something that we can’t stop singing, humming and holding onto, from little things, big things grow.