There are moments in your life you will never forget. For us that moment came when we heard the words “Well, I see 3 heads, but only 2 bodies.” According to a twelve year old girl with great insight I was “very lucky to be chosen to be the mother of those babies.” I didn't feel lucky throughout our extensive ordeal. To look back now though, someone was on our side. Were we lucky? No. We were chosen.
Read the whole story in Andrea Merkord's new book, “Expect a Miracle”
Wednesday, June 19, 2002, in Bend, Oregon
My nurse midwife told me that my uterus measured 5 weeks too large and I was scheduled for an ultrasound the very next day. We would uncover an occurrence so rare none of us had ever seen or heard of it including the ultrasound technician who spoke those fateful words I will never forget. We were pregnant with conjoined twins along with a triplet in his own sac. On the left side of my uterus was a beautiful, healthy, “normal” boy. In the sac to the right was a horrifying scene -also 2 beautiful boys, however, not healthy and not “normal”. An associate of my midwife had been in contact with Emmanuel Hospital in Portland . We were given phone numbers and told to contact them.
Monday, June 24, in Portland
The information we received was much more detailed. The “twins” were joined at the chest with 2 heads side by side and an arm on each side, with 2 spines and only 2 legs. We were given an in depth explanation about the anatomy of the twins body and organs. We received further distressing news. The babies shared blood through the placenta unevenly. They suffered from Twin to Twin Transfusion Syndrome. This caused the twins to become anemic and caused the single baby's heart increased stress. That baby, Thomas, also had excessive amounts of fluid in his sac.
We were given three options: 1) terminate the pregnancy 2) have bi-weekly amniotic fluid reductions for Thomas, which did nothing to guarantee his survival of 3) selective termination of the twins to try and save Thomas. Unhappy with any of the options, I asked, “What if we do nothing?” The answer was 90-100% chance they would all die, and soon. With heavy hearts we gave them permission to contact doctors in San Francisco who could possibly help us. After talking with Dr. Sandberg from the University of California San Francisco (UCSF) on Thursday June 27th we packed in fifteen minutes and boarded the next available flight. Dr. Sandberg removed 1 1/2 liters of fluid from Thomas's sac. He then told us we had to wait and come back on Tuesday! When Tuesday finally arrived they did a fetal echocardiogram of all 3 hearts and determined that the twins partially joined hearts had no chance of functioning outside of the womb. We opted to go ahead with the procedure which would sacrifice two precious lives to save one.
Wednesday, July 3, in San Francisco
The surgery was performed and had huge risks, including a stroke in Thomas or even death. Dr. Diana Farmer performed the surgery that appeared to go well and cause no harm to Thomas. We returned to Bend, and weremonitored very closely. At an ultrasound just 1 short week after surgery we found more disturbing news. The membrane between the sacs was no longer in tact and long strands were floating freely with the babies. Now what?
Friday July 19th
We returned to Portland to find out Thomas was in terrible danger. We found out the risks included cord entanglement with the other cord and the membrane cutting off blood circulation to Thomas. There was nothing we could do but watch and wait. The earliest he could be delivered was 24 weeks, still a long month away! We had ultrasounds and doctor visits each week to see if Thomas was still alive. It was a helpless feeling. Then it happened, a new term we would become increasingly familiar with, Amniotic Band Syndrome.
Friday, August 16th
There was a band wrapped so tightly around Thomas's left ankle that his foot was going to self amputate. We were barely 24 weeks along and contemplated delivering him early. I was started immediately in steriods to help his lungs develop. After a brief conversation with Dr. Sandberg at UCSF, who sounded surprisingly excited to do the surgery, we were packing again. August 23rd we had surgery performed by Dr. Michael Harrison who had to cut into Thomas's leg to get the sticky band to release. The actual results would not be known until birth, but blood flow was greatly improved to the foot.
Wednesday, August 28, 2002
We were scheduled to return home. I suddenly had massive bleeding and heavy contractions. With swift action by the staff my labor was stopped and Thomas appeared to be all right. The blood was my own and was not causing him an immediate threat. On Labor Day weekend Sean went home and I had an ultrasound that showed very little fluid around Thomas. My membranes had ruptured. I was destined to remain in a hospital bed until Thomas arrived. Dr. Robert Ball put in a valiant effort to arrange transport to get me closer to home. On October 1st, I was transferred back up to Emmanuel Hospital. I would see Sean for the first time in 5 weeks.
Three weeks later on October 19th, Thomas came on his own at 32 1/2 weeks and weighing just shy of 4 lbs. He was breathing on his own and had 10 fingers and 10 toes! He came home November 11th on oxygen and an apnea monitor. At exactly 2 months old Thomas had plastic surgery to remove the scar tissue around his left ankle that still threatened blood flow. On March 28, 2003 he also underwent open heart surgery for an unforeseen congenital defect. He recovered beautifully from that as well. We are the biggest fans of the UCSF Fetal Treatment Center team. They saved my son over and over again!
The weekend before our 2nd fetal surgery on a shopping trip with my pregnant sister, I walked into a store that sold music boxes. One box caught my eye from across the store and I walked directly to it. The inscription read “Expect A Miracle”. I know that was a promise from God spoken to me that day. I received nothing less than that, a true miracle.
Baby Sarah Elizabeth has a very successful recovery from an SCT which is removed while she is still a fetus.