Alex’s CHD story

Me: Heather

Our son: Alex, two years old
CHD: Congenital Heart Block

My husband, Martin, and I always wanted children so after nine months
of trying, we were elated to find out I was pregnant in October 2010.
Everything was going to plan and at the 20 week scan, we found out we
were expecting a baby boy that we decided to call Alexander David.
Alexander after my grandfather and David after my father. Our “beloved
warrior.” I never knew how true that would ring.

At 25 weeks pregnant, the midwife was listening in with the doppler
and thought his heart rate sounded odd. We were sent off for a scan at
the hospital. Our baby was diagnosed with a congenital heart defect
called fetal heart block. This is where the top half of the heart
beats faster than the bottom half. In some cases, this is caused by
unknown reasons, but in my case, it was caused because I carry lupus
antibodies. I did not know about this and according to my consultant,
I probably would have never known had our baby not been diagnosed. We
were scheduled for an ultrasound a week until he was born to monitor
his heart rate as a Doppler would be not as effective for this
condition. They were looking for his heart rate to drop below 50bpm or
for him to develop fluid around his organs. Initially, they thought I
would be delivering at 28 weeks in Yorkhill Hospital in Glasgow, but
held off on steroid injections just to see what would develop the
following week. I am forever grateful to our cardiologist for this
because Alex blew them all away. His heart rate stayed between 63 and
69bpm throughout the rest of my pregnancy. I was scheduled for an
elective c-section at 39 weeks because labor could potentially place
too much stress on his wee heart.

Fast forward to 17th of June 2011, the day of the c-section! I was
very nervous and scared. There were a lot of tears and worry the night
before. I had basically prepared myself for the worst: that Alex’s
heart rate would drop and he would need to be rushed to Glasgow. We
arrived at Ninewells Hospital at 8am, planning to be in theater for
9am and for Alex to be here before 10am. Surprise surprise, nothing
goes as planned. There wasn’t a bed available in the NICU, where Alex
would be going for monitoring after his birth. So, we had to wait. And
wait. AND WAIT! I had been fasting since midnight the prior night and
was getting very cranky and hungry. FINALLY, we got into theater at
about 3:35pm!

During the c-section, I could feel people touching me, but no pain. It
took both my consultant and her assistant pressing on my stomach to
get Alex out! The consultant said trying to get his head was like
trying to grab a greased up rugby ball, lol! Little man did not want
to come out! Finally, out he came, wailing his head off at 4:01pm. He
was held up for me to see and then whisked into the next room. They
began stitching me up. During this whole time, I was looking over at
the room waiting. Finally, after what seemed like an eternity, the
pediatrician poked his head out and said, “He’s absolutely fine.” I
broke down crying. My husband went to see him and they brought him out
for me to have a quick cuddle. Then, he had to go to the NICU. They
finished stitching me up and brought me into recovery. I had to wait
until the spinal wore off so I could go see him. It did about four
hours later and I was able to shift myself into a wheelchair.

There were three nurseries in the NICU. The first has all the
incubators in it (Alex was in an open crib though cause he didn’t need
extra warmth). The second room is more of a nursery setting and
parents are encouraged to do as much as possible with their little
ones. The last is a transitional care unit for mothers and babies to
get used to having a baby (like if the LO has been in for a long time
after the mother has gone home, etc). In the span of four days, I was
moved from the ward to transitional care. Alex went from the first
room to transitional care. He was born on Friday and we were home by
Monday night. His heart was monitored and the heart rate actually went
up! They did a scan of his heart as well as an ECG (echocardiagram).
His resting heart rate was between 60-70bpm going up to 80-90bpm when
he cried. Still, not ideal for a newborn, but good enough that the
doctors were not concerned.

After 14 weeks of scans and worry, Alex was fine. He won’t need a
pacemaker until he starts complaining about not being able to keep up
with other children. He just turned two and his heart is still going
strong. A recent 24 hour holter showed that he was still able to pace
his heart on his own. Granted, I’m terrified of that day coming and
I’m always keeping in the back of my mind the fear that something will
change and he will need one sooner, but for now, I’m just going to
enjoy being a mommy!