April 17
Corinna took Nia to a paediatrician in Fulda for a
routine check-up. The doctor closed her eyes as
she listened to Nia's heart through the
stethoscope. She heard a murmur and recommended
that we eventually get an ultrasound of Nia's
heart. Because we were only in Germany on
vacation, we had it done immediately. The
ultrasound showed oxygen-rich blood flowing back
out of her heart's left ventricle through the
mitral valve into the left atrium (and back toward
the lungs). Also, the muscle of the left ventricle
looked very weak. We were immediately referred to
Dr. Bauer, a paediatric cardiologist at the
Children's Hospital at the University of Giessen
(a regional medical centre for children's cases).
We left from the Fulda hospital and drove directly
to Giessen.
April 18
Doctors inserted a catheter into Nia's thigh and
snaked it through an artery to her heart. They got
a close-up look at the problem and confirmed that
it was
Bland-White-Garland Syndrome (only her right
coronary artery originated from the correct
source--she did not have a properly functioning
left coronary artery). Surgery was scheduled for
first thing the next morning to make a bypass to
function as her LCA.
April 19
Nia got a morphine injection in preparation for
her operation this morning. Surgery, performed by
Dr. Akintuerk, lasted over 3 hours (they had
estimated 5 hours). We went to Nia at the
intensive care ward. She was deep asleep, knocked
out from a combination of morphine- and Valium-
like sedatives. She also had IV's to thin her
blood, regulate her heart, raise her blood
pressure, and feed her glucose and minerals.
Doctors told us the operation went well. We held
her hands and felt her squeeze back.
April 23
Nia left the Intensivstation and was moved to the
Station Czerny recovery ward. At Czerny, she
continued to receive a blood-thinning agent via
IV. She seemed quite unhappy. Maybe she was hungry
or had pain. She eagerly drank some formula late
in the afternoon, but spit it all back up. Later
she was able to keep down a full 8 oz. bottle of
formula. After that, she seemed calmer and enjoyed
playing with her toys. It got dark around 8:30.
She drifted off to sleep.
April 24
Nia finished a prescription of blood thinner today
and was IV-free for a while until she got some
anti-biotics this evening. She showed a wider
range of emotions and was more interested in toys
and other distractions. In between, though, were
long periods of quiet staring.
Dr. Bauer did another ultra-sound. He said the
heart seemed to be pumping with more strength now,
though the mitral valve was still weak and the
middle wall wasn't completely flexible. He said
the duration of those repairs could be up to a
year. Mostly because of her bypass, Nia will need
an ultra-sound every few months.
May 3
Dr. Schranz, professor and chief doctor of the
cardiology clinic, inserted a catheter to inspect
Nia's heart. In the evening, he sat down with
Corinna and me to explain things. The operation
was a success, and he showed us the video of the
catheter probe to prove it.
He showed us the bypass, and how it functioned
compared to her normal (right) coronary artery
(RCA). Before the operation, the RCA had provided
all the blood to the heart muscle. However, the
blood was being shunted out of the heart through
another artery. During the surgery, the shunt path
was closed.
One of Nia's mammary veins, commonly used for
bypasses, was removed. It was connected to an
artery leaving Nia's left atrium, attached to the
outer wall of her heart, and connected to the
tissue of the heart muscle. We could see in the
video that blood was flowing through the bypass
and into a small portion of the network of
capillaries (collateral arteries) in the left side
of the heart muscle. We also saw how the right
side's network of capillaries had extended to
supply the left.
We saw the function of the mitral valve. Contrast
solution flowed back and forth between the
ventricle and the atrium (mitral
valve regurgitation), indicating an insufficiency of the valve. Dr. Schranz said the
problem had been worse before the operation, and
may continue to improve. The current severity is
between 2 and 3 (3 is worst). He has prescribed
Captopril and Tenormin (Atenolol) to reduce the
load on the heart, to help it strengthen itself.
Nia remained in hospital for 24 hours after the
catheter examination, then was released.
May 11
We visited Dr. Schranz for one last ultra-sound
before leaving Germany. He said the mitral valve
was not showing improvement, but all other heart
functions were fully recovered and now normal. He
added Lanitop (Digoxyn) to her prescribed
medications. He recommended close observation over
the next several months to witness the development
of the heart muscle in relation to the volume of
blood flowing back through the mitral valve.
May 17
Nia was seen by Dr. Burch, the paediatric
cardiologist from Oxford responsible for Milton
Keynes patients. He made an ultrasound of Nia's
heart as an initial observation. He said that he
was surprised how well the mitral valve
functioned--from reading her report, he had
expected worse. He recommended monthly general
exams by her paediatrician, and an exam by a
paediatric cardiologist such as himself every 3
months.