John and Kelsey Palmer were so excited to be pregnant.  Kelsey was about 8 ½ weeks along when she found out she would be having twins!  Kelsey had two ultrasounds to confirm that there were two babies.  Around thirteen weeks she had a follow-up ultrasound for growth and development.  It was during this ultrasound the technician was unable to see a membrane separating the twins and when John and Kelsey were sent to a perinatologist for further ultrasound testing.  “We were very nervous that we might lose our twins,” says Kelsey.
 
During the follow up ultrasound, which Kelsey said “seemed to take forever,” they were still unable to see a membrane.  After doing a trans-vaginal ultrasound, they were able to see a membrane separating the babies. “We were both so relieved,” explains Kelsey.  “I felt like everything was going to be ok and that we both were going to be able to relax for a little.”

Over the next few weeks they just enjoyed being pregnant, with girls! They took a vacation to San Francisco and were both having fun buying baby things.  Then, around twenty-one weeks, a problem was discovered during a follow-up ultrasound.  The ultrasound tech had their doctor come in to continue the rest of the ultrasound.  At the conclusion of the ultrasound John and Kelsey were told that there was a possibility that their girls could have Twin-to-Twin Transfusion Syndrome, or TTTS.  This is when the babies share a placenta and also have connecting blood vessels.  One twin is usually the donor and one is the recipient.  Their doctor also said it appeared that one of the babies might possibly have a two vessel umbilical cord.  Normally there are three vessels.  Kelsey was told to come back in a week so they could check on the girls again. 
That next week was filled with research and worry for John and Kelsey.  After their next follow-up, the doctor told them that it looked like they had TTTS.  Their options at this point were to do nothing and just watch while our babies got sicker, or their doctor could refer them to a surgeon that specialized in TTTS laser surgery.  “We opted for the referral and went to Evergreen Medical center to see Dr. Walker.”
They decided in the meantime to name their girls. “I just thought if they were going to have to go through surgery, and there was a chance they may not survive, that we should name them now,” explains Kelsey.   “We chose Khloe (which means blooming) and Kallie (which means beautiful).  John came up with the middle names by splitting my middle name, Elizabeth, so that they would both have a part of my name.”  At this point the future was very uncertain for Khole Liz and Kallie Beth.  John and Kelsey tried to stay calm and not worry too much, even though they knew that they might not have both of their beautiful babies to love.

After seeing Dr. Walker their hopes were even worse.  He said that the girls did have TTTS and that Kallie, their smaller twin, did have a two vessel cord and her cord was also inserted on the edge of the placenta instead of the center.  This made it very difficult for her to receive adequate perfusion.  So they were faced with a very difficult decision. “Kallie was working very hard to survive, and if she were to die Khloe could die also because of their shared blood vessels,” explains Kelsey.  John and Kelsey were given the options of doing nothing, having laser surgery to separate the girls, or having the surgery and ligating off Kallie’s cord so that Khloe would be guaranteed survival.  After many tears and much discussion, John and Kelsey decided to have the surgery.  They did not, however, opt for the cord ligation because they felt that they had to give both of their babies every opportunity to survive.  “In having the surgery we were hopeful that Kallie, who was the donor, would receive increased perfusion and do better afterwards.  Neither one of us could imagine life without both of our girls,” says Kelsey.
The surgery went well, and both babies were alive and doing fine.  John and Kelsey were very relieved, and felt like everything was going to be okay.  The next day, before Kelsey was discharged, another ultrasound was performed to see how the babies were doing. “Then we received the worst news of our lives.”  Sometime during the night, Kallie Beth did not survive.  Khloe was still alive and looked to be doing well.  John and Kelsey were devastated and shocked.  They could not believe they had lost one of their babies.
 
The next several weeks were very hard.  “We both cried a lot,” says Kelsey.  “And it was hard for either of us to talk about for awhile.”  The hardest part for Kelsey, who works as a labor and delivery nurse, was when she was at work and patients would ask her what she was having.  “It was so hard to know what to say,” she says.  Kelsey continued to carry Khloe until she was thirty-nine weeks and two days, when she was born a healthy 7# 1oz.

After Khloe was born John and Kelsey had a quiet moment with both of their girls.  “Kallie still lives with us every day in our hearts, and Khloe knows that she has a sissy in heaven watching over her,” explains Kelsey.  Every year on their birthday John and Kelsey get two balloons; one for Khloe to keep and one for her to send to sissy Kallie in heaven.  “It is still hard even three years later to think that we should have two beautiful girls that look like Khloe,” says John.   “I sometimes wonder what they would have been like together and if Kallie’s personality would have been similar or different from Khloe’s.  Even though we miss Kallie so much, Khloe is our living angel, and I think we love her even more after this experience.  I know God is watching out for our angel in heaven and some day we will see her again.”
“Going through this journey has definitely made our family closer,” insists Kelsey.  John and Kelsey have also become involved with the Fetal Hope Foundation.  “It has been great to meet others who have gone through similar situations, and also to know that we are helping raise money toward something this meaningful.”
 

Lisa and Bryan Beymer’s story began much the same as many other couples who have become victims of Twin to Twin Transfusion Syndrome (TTTS).  They were thrilled to find out they were expecting a baby and were looking forward to starting their family together.  They had all the standard blood tests, and became very concerned when their quad test at 15 weeks came back outside the normal range.  The follow up ultrasound showed that there were TWO babies!  They were shocked to find out they’d be looking forward to twins, but it only took a couple of hours to fall in love with the idea, and with both of their babies. 

During that same ultrasound they were told that it looked as though their twins were mono-amniotic (shared the same amniotic sack).  This is a rare and very dangerous complication for identical twins.  Lisa and Bryan claim they were very naive- they didn’t know what they were facing and tried to focus on their babies and the life they wanted to make with them.  They were told they were too “high risk” for their current doctor’s office, and it was recommended that they go to a different area hospital for a higher resolution ultrasound.  It was a whirl wind of internet research, new doctor appointments, and the feeling of being lost in a medical works they didn’t understand.
 
Lisa’s higher resolution ultrasound did show a membrane between the babies, but at the same time her babies were diagnosed with TTTS.  This gave Lisa and Bryan a moment of relief (having the membrane between them was a good thing), but plunged them into a whole now world of research and concern for what was to come.  That is when they were referred to Dr. Martin Walker at the Maternal Fetal Medicine clinic at

The surgery went smoothly, and Lisa’s night spent in the hospital to monitor for contractions and any sign of distress was as comfortable as it could have been.  All went well, and as early as the next morning an ultrasound showed that the fluid levels for both babies were beginning to level out.  The Beymers were increasingly optimistic that they had beaten the syndrome and would soon have two beautiful boys at home with them. 
 
Unfortunately, Lisa and Byan’s story ends differently.  The surgery seemed to be a success, and the condition improved for the next 6 weeks.  “Then, at 24 weeks, we lost our “baby B”, Jacob.  We were devastated.  We had worked hard to prepare ourselves for a loss prior to the surgery, but in the weeks that followed it we had allowed ourselves to feel increasingly optimistic.”  They now focused on their survivor, Noah.  Noah was the recipient, he was larger and stronger.  “Dr. Walker was very up front with us, though,” adds Lisa.  “Noah was still in danger.” 

The surgery had caused a leak in Noah’s amniotic sack that had separated it from the wall of the uterus.  Lisa and Bryan were told there was a chance Noah would cause that hole to grow and would be in danger from the shredded membrane.  3 weeks after the loss of Jacob, the shredded membrane found its way around the umbilical cord and Noah was lost as well.
 
Noah and Jacob were born sleeping on Dec. 29, 2005.  “Although we clearly did not get the result we were hoping for, we were so touched by the kindness of the people we met along the way.  From the doctors and nurses at Evergreen, the families we met who had the same look of apprehension on their faces in the waiting room, to the strangers who took the time to read and answer internet posts and bring us comfort that we weren’t alone.  We spent a long time quietly in our living room trying to understand why this had happened to us and what we could learn from our heartbreaking experience.  What we discovered was that we had an incredible group of friends and family around us who had stood with us through the entire fight, and had shown us how lucky we were to have such an army of support.  We learned to believe in the strength of our relationship and that there was nothing we couldn’t get through together, and we learned to believe in the kindness of strangers.” 

Lisa and Bryan still miss Noah and Jacob everyday and the lives they should have had, and claim to never be the same people they were before their battle with TTTS.  “But,” adds Lisa, “we are stronger and more appreciative of what we have as a result.  I got invlovled with the Fetal Hope Foundation’s

Though very shocked and excited when they first learned they would be having twins, the thought of complications that can arise from a twin pregnancy never entered Casey and Ebru Middlebrooks’ minds.  Their pregnancy started normal, like any other pregnancy, but at 18 weeks gestation, Ebru began having cramps and her belly got very tight and uncomfortable.  Fortunately, a friend of Ebru’s had informed her about Twin-to-Twin Transfusion Syndrome and its symptoms. Ebru scheduled an emergency visit with her OB doctor shortly after her cramps started and she was referred to see a specialist at the University of Alabama at Birmingham’s Maternal Fetal Medicine Clinic where her twins were diagnosed with TTTS.   After a series of unsuccessful amniotic fluid reductions at UAB, the Middlebrooks’ were recommended to the Fetal Care Center of Cincinnati where Ebru underwent Fetoscopic Laser Photocoagulation and Microseptostomy that ultimately saved their babies’ lives.  There were some complications with their donor baby after the surgery due to hydrocephalus (swelling of the skin and extra fluid around the brain).   However, at 25 weeks of gestation, and after a long and trying pregnancy, filled with uncertainty and even life-saving medical intervention, Casey and Ebru Middlebrooks welcomed sons William Grady and Aiden Harvey into the world.  “Immediately after birth, Grady was transferred to Children’s Hospital to have surgery to take out about 8 inches of his small intestines.  It took a little while before he could start eating and he had to spend a little extra time at the hospital before coming home,” said Middlebrooks. “I give God all the glory, for they are both doing great.” In early 2009, the Middlebrooks’ welcomed the boys home, together for the first time since birth.   The couple is planning to host the 1^st Annual GolfHope charity golf tournament in June in honor of their twins and others dealing with fetal syndromes. When asked advice for other families faced with fetal distress, Middlebrooks said, “first of all, pray and then pray some more.  Know that God is there for you and that He loves you.  Then seek information, arm yourself with knowledge, but rely on your heart to make decisions.  There will be many obstacles, but know that God once gave up a Son and through that knowledge He can grant you peace.”

On most snowy days in Charlotte, people’s minds are filled with wonder and awe at how beautiful the city becomes when blanketed with the white fluff we so rarely see in our area. Children grow excited as they learn that school is closed, and parents and adults alike, enjoy spending quality time being kids again. However, on one snowy day in February 2007, Tim and Kim Bogert will forever relate snow to a different experience altogether. When receiving a routine ultrasound in their 35-week twin pregnancy, the Bogerts learned that one twin had no heartbeat. They were rushed for an emergency cesarean section and delivered a lone survivor of Twin-to-Twin Transfusion Syndrome, or TTTS. Now, snow-filled days serve as a glaringly fresh reminder of loss and heartache, of miracles and hope. Unlike many pregnancies, Tim and Kim Bogert had a rocky start in believing a miscarriage had occurred. However, at 12 weeks into the pregnancy, a routine ultrasound showed they were expecting not one, but two babies. The ultrasound revealed that Xan had velamentous cord placement and had a much smaller share of the placenta that he was sharing with Cole, so the doctors monitored the Bogerts for TTTS, a disease of the placenta that causes disproportionate nutrient and blood flow. From the beginning, the Bogerts were prepared for the possibility of complications and an early delivery by 28 weeks. “At every follow-up visit and ultrasound, we seemed to be defying the odds with no signs of TTTS and steady and equal growth of both boys, which dumbfounded the specialist, in particular. Because of the cord placement and placental share, he pored over the monitor looking for the smallest hint of trouble, and after every visit he’d say how perplexed he was that everything looked good, and would schedule us for a follow-up visit the next week,” said Tim Bogert. Despite early warnings of a potentially complicated and short pregnancy, the Bogerts made it to 35 weeks and scheduled their delivery for one week later on February 7, 2007.  “What started out as a snowy day in Charlotte, attending this final scheduled ultrasound at our specialists’ office, turned into both the brightest and darkest day in our lives,” said Bogert. “After getting extensive readings on Xan, the sonographer turned over to Cole and found no heartbeat. After what seemed to be a spotless run at a very high-risk pregnancy, the worst-case scenarios were all playing out. In a blur of panic, disbelief and absolute horror, we were rushed across the Presbyterian Hospital medical complex to an emergency caesarean delivery to save Xan.”  The doctors believe Cole died sometime the day or night before. They explained that he simply fell asleep and died. Essentially, as a result of the TTTS that apparently surfaced at the last minute, Cole gave his nutrients to Xan and helped him grow past where he would have on his own.  After delivery, the medical team had to rush Xan to the Neonatal Intensive Care Unit due to disproportionately high bilirubin count for phototherapy, oxygen and monitoring. The Bogerts barely had time to see him before he was whisked away, but then they were faced with meeting Cole who would always be known as his brother’s hero.  Bogert said, “I turned around, and saw this little angel, swaddled up and wearing a cap like all babies in the hospital wear. He looked so peaceful. I thought it was Xan and said, ‘Oh look how sleepy and peaceful he is’, only to be slapped with the realization that it was Cole. I just lost it. Kim held him and kissed his little face. I saw that his blanket was a bit loose and that his hand was right there, so I reached for it. It was cold. Kim and I both sobbed uncontrollably, and just held him and told him we missed him and that we loved him so much. Then we let him go.” 

That day will always be remembered as the one where they were unable to hold their surviving twin, yet got to hold for the first and last time, their twin that died to save his brother’s life. “It is impossible to separate the experience of losing Cole from the experience of the miracle of Xan surviving. Cole gave his nutrients to Xan, and without Cole there would be no Xan. Our doctors said that if we hadn’t come in for our ultrasound on that snowy Friday, we most certainly would have lost Xan, too,” said Bogert.  In describing their emotions, the Bogerts experienced grief, despair, sorrow, loneliness, bone-crushing sadness, guilt, fear, doubt and pain. But they also experienced relief, joy, happiness, overwhelming love, comfort, gratefulness and peace at the same time. They attribute much of their positive outlook to the staff at Hemby Women’s Center and NICU, who is remembered as being compassionate and sensitive to the family while watching Xan struggle during his first few weeks of life.  “Kim made an analogy that dealing with our loss is walking through water. Some days the water is shallow, and pretty easy to rise above. Some days it’s very deep and we feel like we can keep walking if we’re on tippy-toes and looking up,” said Bogert. “Some days we’re on tippy-toes and the bottom is green and slimy, and it’s easy to go under. But we’ve seen a definite trend from most days being in deep water, to most days being knee or even just ankle deep”. The Bogerts have since begun to heal and live through their loss by reaching out for support from area groups, as well as those specific to TTTS, such as the TTTS Foundation and the Fetal Hope Foundation. The family visits Cole’s “park” each weekend with fresh flowers and plenty of time; time to reflect, time to heal, time to nurture, and time to focus on the future with a son who will always be a part of his twin. “As an 18 month old boy, I’m not sure what exactly [Xan] feels, and our job will be to make sure [he] has a positive perspective on things when able. Kim put it very well that Xan is not deficient because he doesn’t have his brother with him. He’s special because his brother will always be part of him. We’ll take each day and challenge as it comes,” said Bogert.  In honor of Cole, the family will participate for a second time in the 3^rd annual TTTS Race for Hope in Charlotte held on Saturday, September 20, 2008 at Freedom Park. The Bogerts will be among many families walking in honor and celebration of surviving and lost babies to fetal syndromes like TTTS. When asked about life today, the Bogerts agree that life is good. After celebrating the birth of Finn in early June, the Bogerts are like any other family adjusting to life in a house with boys that are less than 2 years apart. However, they are different because of Cole and because of a little known disease that changed their lives forever. “There’s not a day that goes by where we’re not affected by TTTS. As we watch Xan develop and reach milestones, it’s hard not to let our minds ask, ‘what if?’ or imagine what Cole would be like, or what their relationship would be like if he were physically here with us,” said Bogert.    The TTTS Race for Hope gives the Bogerts an outlet to share with others who have experienced TTTS. They agree that the event is a simple way to give Cole’s life meaning beyond family and friends. Bogert said, “Helping to raise money and awareness is part of our healing and gives us an active and positive outlet in a situation that could quickly spiral into despair. It is also very poignant to us that TTTS doesn’t always end in sad stories. There are many stories of both twins surviving and having normal lives, and that’s certainly the way we’d like all of the stories to turn out.”

Last weekend I was in Kirkland, Washington, a small very affluent waterfront town just north of Seattle hosting its 2nd Annual TTTS Race for Hope (Twin to Twin Transfusion Syndrome). The event was a massive success and although in the shadow of the passing off my dear friend, Steve Stone that same weekend… I had a blast.

It seems that giving back was exactly what I needed. The experience made me acutely aware of the fact that focusing on our own pain, loss, or self pity can be a major obstacle to our success, fulfillment, and happiness. Last weekend was an exercise in shifting focus from self to others. By giving something back in the form of my time and expertise to those people who needed it I received a tremendous gift in return.

Whenever we focus to deeply on ourselves especially during times of challenge our own wow’s, insecurities, and self imposed short comings are magnified. If on the other hand we were to put those things into perspective and shift our focus outward we would soon see as I did this weekend that we’re in pretty darn good shape.

The gift I received was twofold:

First, I was surrounded by survivors, children who if not by the grace of god and the miracle of modern medicine would not even be alive today. Little boys and girls who’s identical twin brothers and sisters may have sacrificed their lives for them. As well as the fortunate little ones who get to embrace their brother or sister every day. Just being around their energy was like a jolt of electricity into my system. 

Secondly, I was reminded of the importance of both contribution and gratitude. In fact I was tremendously grateful for the opportunity to contribute and thrilled to have something worth contributing.

So when you start retreating back into yourself and begin thinking about how tough it is to get started, or keep going, and make it to the finish line… instead start making it about someone else and not you.

Start giving back and contributing to others and I believe you will find life to be a whole heck of a lot easier and a lot more fun. You’ll also discover that it’s not really about the starting line or the finish line but rather what is in between.

PS.  Yeah, that’s me lying there at the finish line… I gave it my all.

When we counsel families dealing with fetal distress and syndromes, we live the fears, hopes, tears and joys with them.  When we see the loss of life, we grieve. When we see success, we celebrate. When we see others do amazing events to raise money to support our mission, we see hope.