Written by Paul Schwendinger…
Luca’s condition is 1 in 500.000 but to us Luca is the light that shines brighter than 500.000 lights
This is not your ordinary story, and not quite what Viviana and I had planned for. Today at age 6, our Luca is thriving, twin 1 to his brother, Paolo, twin 2 and younger brothers to Siena. His days are far more carefree as he has adjusted resiliently to his “normal”.
Let’s go back to before Luca and Paolo were born in May 2015. We initially had our first consult when Viviana was pregnant (7 to 8 weeks). The usual trip to the obstetrician was as per normal, they only picked up one little heartbeat and we were none the wiser thinking we were expecting one child only. Excitement was high, with nerves and joy of the second born. When had our scheduled first visit to Prof Nicoleoau at 12 weeks, where we found out that we were expecting twin boys. Panic set in slightly with the anticipation ahead. It was a long pregnancy and Viviana was an absolute champion. All was clear by Prof in the first and second visit.
So fast forward to our last few weeks, and our obstetrician felt we needed to push the delivery ahead, as twin 1’s growth had ceased. Probably our first warning sign of something more happening with our little Luca. But also very much the norm in a twin pregnancy. The boys were delivered at 35 weeks with Dr Mackay (neonatologist) present and we felt reassured that we had pushed as far as we could.
Twin 2, Paolo, required neonatal care after delivery and was off to the NICU. This would have been the boys first separation from each other. Emotions ran high as our family felt torn in two, a feeling we were not aware would be become our new norm. Paolo was a champ and his resiliency proved strong as he was out in two days. It wasn’t great to have been separated from birth, but Dr. Mackay was on top of it. Meanwhile twin 1, Luca was back in the room, with Mom, and drinking like a champ… This was the start of a long 6 months, for Luca.
We returned home as a family and with Siena, our family felt complete. We were none the wiser, as the boys fed well and the intensity of double nappies, double feeding and sleepless nights set in. The obvious was not so obvious and in the haze of a new intense routine we missed that Luca was using triple the amount of nappies, and his need for fluids was masked by what we thought were perhaps needing to feed for growth spurts.