In 2017, during our 20 week scan, we found out that our baby had a rare heart condition where one of the valves hadn’t formed at all. The prognosis wasn’t good as the doctors were expecting that the heart would enlarge during the pregnancy and we would not progress much further.
At the start of the October we met the cardiologist again and he was surprised at the scan. Other than the heart being slightly enlarged baby’s growth was relatively normal and we were told to expect that we might even be able to get home after the birth before needing further surgery.
Not long after that we started on another rollercoaster experience. Some of baby’s measurements were increased off the scale and we thought that the baby would need to be delivered very early, which was at odds with the cardiologist wanting baby to grow as much as possible. We were given steroids to strengthen the baby’s lungs in preparation for an early delivery and kept in for close monitoring. We were then discharged but required to go to hospital for daily monitoring as the doctors had to continually weigh up the risks of early delivery with the knowledge that baby was not very happy. After seven weeks of daily monitoring Lois was born via C-section.
At that point, Lois spent some time in NICU where they took blood for genetic testing which came back showing she had a rare 5q15 - 23.1 deletion.
One of our biggest hurdles so far was when Lois was six weeks old and not long home from hospital, she was rushed back in and spent time in intensive care due to bronchiolitis.
Lois has continued to thrive and surprise everyone. We have multiple hospital appointments, sometimes on a weekly basis. She has yet to have heart surgery - which we would have expected to have been needed by this stage - but she will still need to have it in the future. She has had problems feeding and was NG fed for a while. She also has a submucous cleft palate. Lois learned to sit up on her first birthday and to crawl in the last couple of months. She has hypotonia and hyper-mobility and has an adapted pram to use when out and about as well as a standing frame and a special chair in the house. Despite everything that Lois has gone through she is a very happy, smiley, sociable girl.