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.