After some initial concerns at the 20 week scan, Natalie’s baby was discharged after birth. Ten days later, baby Callan became seriously unwell. Natalie tells Callan’s story here:
At my 20-week anomaly scan, all was going well until the sonographer reached the heart. The sonographer said she could see what looked like an extra vein. Due to this, she would have to refer us to Fetal Medicine. We had an anxious one-week wait, but upon attending the appointment, we were told that Callan had a bilateral SVC. They told us not to worry and that everything else looked good (if only this were the case). We were seen by Fetal Medicine a further two times in pregnancy. Again, we were told everything looked fine and that when Callan was born, he would go for one scan and then be signed off. I was told they would know when he was born, and they would get me in for a scan (this didn’t happen).
Callan was born on the 4th of June via caesarean section, and we were discharged from the hospital after a few days. Everything seemed fine until about ten days later. I felt his breathing was fast. Plus, he was sick after every feed and hardly drank any milk. I phoned the cardiac nurse specialist to book his echo while all this happened. We attended the children’s A&E and were told everything was fine. I am so glad I didn’t listen and took him up the next day. What happened next I can only describe as like a scene from Casualty. Callan’s dad and I were sitting there whilst they performed his echo. At this point, we were told he was in heart failure and had to be stabilised immediately in the Intensive Care Unit (ICU). They didn’t know what was wrong at this moment in time. The consultant told us to prepare for a long road ahead, warning us it could be weeks before they could operate because of how unwell Callan was. I felt like I was suffocating – how could all of this have been missed despite being seen by Fetal Medicine THREE times? The next day, we arrived at the ICU, and a very nice consultant told us that Callan had Coarctation of the Aorta (COA). We were informed they would operate two days later because he had stabilized quickly. They said he also has a bicuspid valve, although it seems to be functioning fine.
The day of the operation was the longest day of my life. I was screaming at one point due to how scared I was. When we got the call to say the surgeon wanted to speak to us, we ran to the ICU, feeling sick to our stomachs. Thankfully, Callan’s operation had been successful, and then it was on to recovery. Callan was only in the ICU for six days before being discharged from the ward for another week. The consultant who saw us when Callan became admitted came to see us to say he was wrong about Callan, and he was so glad he was proven wrong. This was an amazing result because we were told he would be in for months. Callan is now 15 weeks post-op and is thriving. Despite having to attend cardiology check-ups, they have said Callan should live a normal life, which is all I want. You would never know to look at him what he has been through.
I believe early detection of heart defects is imperative to ensure that operations are much more controlled and sick babies will be less likely to be sent home. Callan’s situation was extremely traumatic, and I am receiving therapy for it. If we had known about it, we could have mentally prepared ourselves. When Callan was in hospital, Tiny Tickers was my lifeline. To be able to read all the positive stories about COA, was what kept me sane. To anyone going through this right now, I hope Callan’s story comforts you.
I am so passionate about pulse oximetry machines being used in every hospital. I am taking part in The 125 Challenge to raise funds for this and spread awareness.