TTTS Tuesday - The TTTS Support Team and Chase and Tyler's Story

I mentioned in my last TTTS Tuesday that I wanted to highlight some of the TTTS Mothers who have taken their loss and turned it into something amazing. I highlighted Andrea and her project to collect Molly Bears for moms with empty arms.

After I lost Kathryn I started looking into support groups on Facebook. On one of the TTTS boards I saw a message posted about a Support Team that sends care packages to loss mothers. I sent in my information and a short while later I received the most touching box from Rachel, who actually also lives in Columbia and lost one of her twin daughters to TTTS. The package included a frame for Kathryn, a journal, some comfy socks, support materials, and other items meant to pamper and comfort me. I was amazed by the generosity and asked Christina how I could help. I have sent a couple of packages now to loss mothers, and it warms my heart to know I might bring a moment of happiness to a mother during this time of mourning.

So this week I’d like to highlight Christina and the TTTS Support Team, as told by Christina.

Christina

The T.T.T.S Support Team

In December 2011 I was on line chatting with a group of TTTS loss mom’s. We were all about 1-2 years removed from our loss; out of that dark hole of mourning but still missing our angels and wanting to do something to help. I forget the exact discussion now, but we all agreed that sending packages was a great and personal way to be there for the new moms and I volunteered to head up the group.

Our group is one year old now and has grown to about 29 active members and three members who donate their handiwork but do not send packages. We have members from all over the world and every possible T.T.T.S outcome.

Several members have been able to use their special talents for the good of the group such as designing our pamphlet or creating and donating hand made items to include in the packages.

No two packages are exactly alike. Each package is a labor of love put together and paid for by a TTTS parent and sent with a personal hand written card. We try to establish a relationship with the person we are sending to so they know they have a friend to talk to whenever they feel down or need to vent.

If you are interested in receiving a care package, please send your snail mail address, angel(s) name(s) and date(s) to me at Christina Russo Sporer on facebook or chrissporer1122@gmail.com. Put TTTS support team in the title of your e-mail.

If you are interested in donating a craft, book etc. to our team or becoming a package sender you can contact me at the same locations.

Chase and Tyler’s Story

I found out I was pregnant the week after July 4^th 2010. It was my first pregnancy and just like all first time parents, my husband Jason and I were both nervous and excited.

A few weeks later I experienced some spotting and I nervously called my GYN office. The doctor told us to come in right away for an ultrasound. I remember holding Jason’s hand on the way into the office and telling him, “I can’t lose this baby.”

Twenty minutes later I found myself laying on the examination table for an internal ultrasound. The doctor took a look at the screen and said words that no woman in that position wants to hear…”Hmm, this is interesting!” “What’s interesting?” I slowly asked.

“This is one fertilized egg, this is a sack, and this is another fertilized egg.” After a few moments of stunned silence I said “Twins?” My husband got up from his chair in the corner of the room and peered nervously at the screen. “Are there any more in there?” he asked.

We laughed and she assured us that it was just the two of them and that it was too soon to tell if they were identical.

My husband and I walked back to the car in stunned silence that slowly turned into excitement. Jason was especially excited as he is an identical twin.

The first person I called was my friend Kristi. She had two miscarriages and I called her as soon as I started spotting. She had been praying for me all morning.

“I have good news and interesting news.” I told her. “What’s going on?” she asked. I could hear the apprehension in her voice. “Their both fine!” “No way,” she replied. She sounded as stunned as I had been just a few minutes earlier. This was the first of many such fun phone calls and encounters we would have that day.

We got to tell our families, our friends and our co-workers. My boss was so excited after she saw the ultrasound that she actually announced it over our building loud speaker.

Like most pregnant women, I also made the announcement on Facebook and followed up with new posts after every ultrasound.

At 14 weeks, we found out that our twins were identical. I posted about this on Facebook and soon I received a private message from an old college friend.

Her name was Tova Gold. I had gone to college with her and hung out with her often. We had not kept in very close touch over the years and months later she told me how nervous she was to write me this message.

You see she knew I would not want to hear what she had to say. No one wants to hear what she has to say because no one wants to believe that babies die. Yet she took a risk and shared the story of her daughters who are forever nicknamed Sunshine and Daisy.

Sunshine and Daisy were also identical twins. This means that like my boys they came from one egg that split (mono chorionic), lived together in one sack, and shared the same placenta. This is the most dangerous kind of twin because it means they are at risk for Twin to Twin Transfusion, a disease that is caused by an imbalance of the way the babies receive food and nutrients from the placenta. Sunshine and Daisy had succumbed to this disease in 2009.

She assured me that this disease does not happen to all twin pregnancy’s and that she didn’t want me to be upset, she wanted me to be informed so that I could be proactive about this disease and the pregnancy.

She sent me the link to her blog and also the link to the Twin To Twin Transfusion Foundation web site. I began to research the disease so I could become informed in case the worst happened.

I continued to research the disease and I found out that signs of TTTS could pop up around 16 weeks. Before our 16 week appointment I sent out an e-mail to all of my friends and family to please pray that we would not get bad news at our ultrasound.

I was so nervous on the way to the doctors that day. I received a text from my friend Kelly that read “don’t be nervous, I just know you will find out that they are two healthy girls.”

She was half right. That day we found out we were having two healthy, identical twin boys. Another set of Sporer twins to rival my husband and his brother. Both boys looked healthy and seemed to be growing as they should.

Now that we knew the sex we could start to have fun. We went to Babies R Us to register and picked tons of cute matching outfits for our boys. Two of everything. Two cribs, two high chairs, two teddy bears….

Then came our week 18 perinatologist visit. The usual routine was that the ultrasound tech would scan the twins and print the pictures. At the same time the pictures were able to be viewed in the perinatologists private office. Most times the tech would just show him a few of the pictures after we were done. Some days he would come in for a short consultation but other times we would not see him at all.

The scan of baby A seemed to be fine. We got a lot of good shots. He was being still and behaving. Baby B looked like a crazy person. He would not sit still! We joked that he would become our problem child.

Now the scan was done and Jason wanted to go get the car while I saw the doctor and got dressed. This was our normal routine but today the tech asked him to wait. She also asked the student technician to wait up. The two technicians went out into the hall and then Jason and I waited for them to return. My anxiety was mounting as the minutes ticked by. I looked at him and said “Something’s wrong.” He tried to reassure me but I could tell that he felt it too.

Finally the Perinatologist came back and uttered the words that we had been afraid to hear. It was stage 1 Twin To Twin Transfusion. Baby A was so still because he was saran wrapped in my uterus with 1.5 cm’s of fluid. Baby B was so wild because he was overrun with 8.5 cm’s of fluid at the largest visible pocket.

The doctor told us that he was going to make us an appointment at C.H.O.P (Children’s Hospital of Philadelphia) for that coming Thursday but in the meantime he would like to perform an amniotic fluid reduction on Baby B that would hopefully stabilize the T.T.T.S.

Jason held my hand as I lay on the table surrounded by Dr. Aroldi and several of his assistants. I couldn’t look at the screen or the needle so we changed the subject at talked about our favorite vacation destinations. I also spent a lot of time praying.

When he was finished I remember the Doctor said that Baby A, the “stuck” baby gave a little kick. He took this as a sign of hope that he would be okay.

We went home from the hospital and began to call our friends to deliver the sad news. I remember lying on the couch and sobbing uncontrollably.

The next day I called Tova and we had a long conversation about T.T.T.S and the many options that might lie ahead. I was so grateful to have her to talk to.

Finally it was Thursday and time to get up at the crack of dawn to drive to Philadelphia. We had a day long appointment at C.H.O.P.

The synopsis of the day was that both boys were alive and seemed small but healthy. They had reached stage 1 TTTS but they were not candidates for surgery at this time because the amnio-reduction worked and fluids remained balanced. If the fluids became unbalanced throughout the pregnancy we would re-visit the option of surgery.

The recommendation was made that we have 2 ultrasounds per week to monitor the twins.

We walked out into the night sky feeling hopeful about our situation. I told Jason I would like to name them. I called Baby A Chase. This is the name that I picked. I wanted to name the weaker twin. Every time I thought of him giving his little kick after the amnio I would start to cry. I worried that I would never get to hold him in this lifetime and I wanted to give him the one thing that I could- a name. Baby B was called Tyler. I figured that he would be with us and it would be nice to let Jason name his surviving son.

As the weeks rolled on we became more and more hopeful that all of us would come through this pregnancy alive. The ultrasounds all went well, fluids remained stable and both fetuses continued to look small but strong.

At our 31 week ultrasound Dr. Aroldi told us that he was very pleased with the results and was looking forward to watching us raise two healthy twin boys.

At this point I started to let down my guard. I believed that we were out of the woods. That T.T.T.S was a nightmare that occurred in the beginning of my pregnancy but would almost be forgotten by the end. We went back to behaving like “normal” first time parents. We took a tour of the hospital, began to plan the nursery, and I even bought a set of new matching stockings for our whole family.

Then came the second week in December 2010. It has been almost two years now but my memory of that week has not faded. Monday December 13^th I went to the chiropractor. Something didn’t feel “right” after that visit. I’m in no way saying that the chiropractor caused Tyler’s demise, I just think that he died right around the time of that visit. There was no pain but I felt like something was wrong.

The next day was my hair appointment. The woman who cut my hair was a relative of my friend Shirley. We had a nice conversation about my twins but in the back of my head I heard this voice that kept saying to me “He’s already gone.” I dismissed the premonition and chalked it up to nerves.

I woke up on Wednesday December 15^th and prepared to go to my perinatologist appointment. Ever since we found out about the T.T.T.S we always made sure that I wasn’t alone for my appointments. If Jason had to work I would bring my mother or a friend

Jason did not have to work that day but he had been out late with his friends. I felt like something was wrong and I begged him to come with me but he refused. He told me I was over-reacting and I would be fine.

Something did not sit right with me. I knew I shouldn’t be alone but by this time it was too late to find someone to go with me so I got in my car and drove to the doctor’s office.

Twenty minutes later I was laying on the table as my favorite ultrasound tech Jennifer (the one who had assisted during my amnio reduction) rubbed warm jell over my tummy. The scan of Chase went well and then she moved on to Tyler. She rubbed the wand over my belly for several seconds before she exclaimed “I can’t find a heart beat” and laid her head down on my stomach.

Tyler

It wasn’t a complete shock. “Does this happen often?” I asked her, and she shook her head no. I asked her what would happen now and she told me she had to go get the perinatologist.

Dr. Bell was on duty that day. He entered the room after a few minutes and offered me his apologies. He looked at Tyler and then did a check up of Chase who seemed to be doing okay.

He told me that he thought I would have to deliver that day. “At 26 weeks?” I whispered. “He won’t be the smallest one in there.”

I got dressed and Jen walked me to the hospital, which was attached to the Doctor’s office. We had to go to C3 which was the third floor of the Centennial Wing, the high risk pregnancy floor.

Jennifer introduced me to the RN on duty, Shelly, and she walked me into a large empty hospital room. It was set up to hold two patients but thank God I was alone. She had me take off my shirt and put on a belly band and hospital gown. She let me keep on my jeans. She applied more warm gel to my tummy and strapped on a fetal heart beat monitor and a contraction monitor.

She inserted a catheter into my hand in case we needed to do an emergency c-section, I would be hooked up to I.V’s. Then she left me alone. There I sat listening to the sound of hope, Chase’s heart beat going thump thump thump thump thump.

I used this time to start calling my friends and family and try to get a hold of Jason. He wasn’t answering his phone so I called my parents and I called my job.

Jason didn’t get to the hospital until early afternoon. I ended up asking a neighbor to go to my house and wake him up.

We spent most of the day calling relatives and watching T.V waiting for something to happen. By early evening we were joined by Dr. Aroldi and Dr. Unger the neonatologist. He explained that a fetus has a very high rate of survival outside the womb after it reaches 28 weeks. My son was only 26 weeks. Our goal was to keep me pregnant until the 28 week mark and then evaluate from there.

Delivery at 28 weeks probably meant a surviving child but it did not necessarily mean a healthy child. If born that early, Chase would be at risk for blindness, birth defects and cerebral palsy.

As it already stood we didn’t know if Chase suffered any brain damage or illness from the passing of Tyler. There is always a chance that the twin who dies can bleed out into the surviving twin and cause brain damage. A fetal M.R.I could tell us this for sure but we would have to go back To C.H.O.P to have this test. We are a pro-life family but even if we weren’t 26 weeks is too late to get an abortion so the option was not on the table. We were in it now, for better or for worse. The only thing we could do was pray.

The plan was to keep me in the hospital until 28 weeks. I would have an ultrasound every morning. At 28 weeks we would re-evaluate the situation.

The next two weeks seemed to drag on forever. I settled into a daily routine of wake up, have breakfast then an ultrasound. Shower, dress, and spend two hours calling/texting/facebooking everyone I knew to report the news. Thankfully it was always good news. No sign of brain bleeds, strong heart beat, looks healthy.

During these weeks I learned who my true friends were. People who I never expected to come through came to visit me. They brought home made meals and presents but most importantly they brought themselves. They gave of their time to care for me.

On the other hand some people who I expected would be there for me every second were not. Their absence will be forever noticed.

The worst night of my life was Christmas Eve 2010. An ice storm arrived and my husband was sick and didn’t come visit me. My parents were already planning to come the next day. Everyone else I knew was at home with their family and I was alone in the hospital on Christmas Eve.

My dinner was grilled cheese which just made me really sad and I kept picturing Tyler celebrating in heaven and that just put me over the edge. I spent the night crying and posting on the facebook TTTS support sites.

About two days before New Years Eve. I had passed our goal of 28 weeks and Chase seemed to be fairing well the doctor let me go home for the remainder of the pregnancy provided I went to the perinatologist office for daily ultrasounds and NST’s.

I’ll never forget how good it felt to go home on that Thursday. The house smelled like a cinnamon candle and the Christmas tree was in good shape. My husband went shopping and filled the house with healthy foods. I was so glad to be able to sleep in my own bed.

My mom came up for New Years and I was tired and went to bed before midnight. I was awakened by the fireworks that our city lights at midnight and of course, I watched them through my bedroom window and cried and cried.

The ultrasounds continued to look good well into January. It wasn’t until the last week of January, 2011 that Chase’s cord blood flow numbers started to decrease every day. The first “bad” ultrasound occurred on a Thursday.

That Sunday my neighbor and friend Caren came over. She caught my husband and I in the middle of a fight. His argument was that every day a baby stays inside is good, and the earlier he is born the worse his health might be. My argument was that we had no idea what happened to Tyler and we were not getting daily monitoring at the time of his death. What if Chase was headed the same direction? What if I would have to “push out” two dead babies.

Caren understood how upset I was feeling and offered to come to the doctors with me on Monday so we could talk to the perinatologist about an early delivery. Dr. Bell agreed that it was time to end the pregnancy and that I would deliver that day.

Jason and I checked into the hospital late Monday afternoon. We tried to induce labor but I would not dilate. Around 9pm on Tuesday Chase’s oxygen levels started to fail and I was brought in for an emergency c-cection.

My Twins were born around 10 pm on Tuesday, January 25^th. Chase was rushed to the NICU and I got to spend some time with Tyler. I wasn’t prepared for how he would look and I didn’t hold him. This is my biggest regret in life. I can’t wait to hold him some day in heaven.

Chase

Chase spent almost 1 month in the NICU. He came home on February 18^th 2010. He is now a healthy and happy 23 month old and is the light of our lives.

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katbiggie

Freelance writer at Kat Biggie Press

Alexa B, who blogs as "Kat Biggie" is a wife, mother, and writer. She has three children and one in heaven. She recently self published a book entitled "Sunshine After the Storm: A Survival Guide for the Grieving Mother" which is available on Amazon. She blogs about life after the loss of one of her twin daughters to TTTS, motherhood, all things parenting, advocacy, grief support and social good.