Six year ago today I spent the day waiting and
worrying. I had learned about TTTS. I had learned about what was happening inside
of my body and how my boys were handling.
I had learned what could be done and together Geoff and I made a choice
to do all we could to save one or both of our babies.
Today on this twelve day of my gifts for Christmas mourning
project I want to talk about the gift of medicine that I came to appreciate
after our experience and especially after the loss of Cole. I think I always had an appreciation for
medicine but had never grasped just how amazing medicine is. What can be done by these skilled doctors is
nothing short of a miracle. I have
talked about having surgery for years, about how this surgery saved Cameron’s
life and how the blood transfusion he had the next day saved his life or
improved his quality of life. But I
don’t think I’ve ever explained what happened six years ago today and so I
decided today that I would share just what a gift medicine is.
We were faced with the decision of what to do to save our
boys. The odds were in our favour. It was very evident, upon arrival and
assessment, that our case of TTTS had
been happening for days at best and there was very little affect to our boys at
this point. We were told how that could
change and the only way to ensure that the transfusions between the babies
stopped was to do laser coagulation of their shared placenta.
Laser
coagulation is performed in an operating
room. After the patient’s abdomen has been washed with an antiseptic and
covered with sterile paper drapes, an ultrasound is performed to determine the
appropriate spot to enter the uterus. The skin is then injected with an
anesthetic medication to “numb” the area and deep tissues directly under the selected
site. An anesthesiologist will also administer medications through an
intravenous line to produce sedation. A small skin cut is made to allow the
introduction of a thin hollow tube and needle. The instruments are inserted
under ultrasound guidance into the amniotic sac of the recipient twin. The
needle is removed and a telescope (fetoscope) with a thin fiber to carry the
laser energy is then inserted through the hollow tube. The fetoscope is used to
look directly at the blood vessels on the surface of the placenta. Vessels that
are found to communicate between the twins are then closed using laser light
energy. At the completion of the surgery, the extra amniotic fluid in the
recipient twin’s sac is removed to achieve a normal volume. The procedure may
take 45 minutes to two hours depending on the difficulty of the case. Our case
was a bit more complicated because when Dr. Ryan went to trace all these shared
vessels he was unable to see if they were causing issues where the dividing
membrane between Cameron and Cole met the placenta. He needed to make a small hole to take the
laser through to the other side of my uterus and then was able to laser off a
few more connections on that side. This procedure is called a septostomy and in
our case it was actually quite a large one.
Laser ablation has been shown to result in the survival of at
least one twin in 70 percent to 80 percent of cases and both twins in
one-third of cases. Should one fetus die after the procedure, the likelihood that
the surviving fetus will develop complications is reduced from 35 percent to
approximately 7 percent. This is because the babies are no longer sharing blood
vessels between them. In one-third of cases, neither twin will survive. Without
this procedure the chances of both twins surviving is almost 0. Dr. Ryan has shared with us in recent years
that because of the make up of my placenta if we had not had the surgery before
Cole passed away then there was a 100% chance that Cameron would have had
serious neurological complications and a 93% chance that he would have passed
away.
The following day, after we learned that Cole has passed away,
there were many many scans done on Cameron.
His heart looked great… it was in fact a cardiologist who was doing a
fetal echo who discovered that Cole’s heart was no longer beating….but his
brain was showing signs of severe anemia.
There were a few theories shared about why this was happening but it
really didn’t matter why it was happening, what mattered was what this meant
for Cameron and what could be done for hm.
Severe fetal anemia Fetal anemia is an inadequate number or
quality of red blood cells in the fetal circulatory system. Red blood cells
carry oxygen to the cells and organs within the body. Anemia can lead to many
complications in the fetus. As with many fetal conditions, anemia can range
from mild to severe. If the anemia is severe, the fetal heart tries to overcome
the inadequate number or quality of red blood cells by pumping harder. This can
result in fetal heart failure (hydrops).Our case was severe. We were told that all the scanning was being
done to ensure they weren’t going to be treating a very sick baby (who had no
chance at a normal life). Dr. Ryan felt
that the benefits outweighed the risks and that the damage hadn’t been done yet
but it was definitely severe.. If the anemia is moderate to severe, a fetal
blood sampling and transfusion may be necessary. Under ultrasound
visualization, a sample was taken and assessed right in the treatment room. From that assessment the amount of blood
needed to bring Cameron’s blood levels back to within normal ranges was
calculated and compatible red blood cells were transfused directly into his
body.. This procedure is very similar to the procedure performed to obtain a
sample of fetal blood. The following day Cameron was reassessed and was showing
mild signs of improvement and we were discharged with instructions for a follow
up MRI to be performed later that week to assess the degree of brain damage
that he had sustained. Note I said the
degree of brain damage. We were always
led to believe that there was going to be some brain damage.
Thankfully this MRI proved that Dr. Ryan had performed this
transfusion as well as the laser surgery just in time…no signs of brain damage
were apparent.
Things have only improved since this time. The statistics for double survival are much
higher. This is due to a few things but
mostly due to improved surgeon skill with state of the art equipment. That state of the art equipment isn’t cheap
and I am pleased to say that our family and our fundraising efforts have been a
part of the purchase of this new equipment.
Please consider helping us to support this gift of medicine,
this gift of life saving equipment by donating to our 2014 fundraising campaign
via this link. http://mountsinaihospitalfdn.akaraisin.com/PersonalPages/Participant/Home.aspx?seid=6777&mid=66&pid=1891612
We will be travelling to
Toronto on Dec. 22nd to thank Dr. Ryan, seen below with Cameron, and
present him with a cheque representing our 2013/2014 fundraising efforts.
No comments:
Post a Comment