December: TTTS Awareness Month

This essay is part four of the four part series of posts about awareness months which help tell the story of my sweet family. Please click on the links below to view my previous posts about the NICU, prematurity, and pregnancy loss. Thank you for all the support over the past few months while I gained strength to share our story to help raise awareness and build a supportive community to help others in similar circumstances. 

September: NICU Awareness Month

October: Pregnancy and Infant Loss Awareness Month

November: Prematurity Awareness Month

We moved into our new home on August 1st, 2014. The first people we met while we were building were our neighbors, Tara and Don. We were excited they were friendly and warmly welcomed us to the neighborhood. They were also married the year prior like us and were enjoying being newlyweds. Tara and I both said we moved to the suburbs since we knew we wanted to start a family and wanted the extra space our former condos could not provide.

I truly believe fate brought us close because unbeknownst to us our lives would run parallel the next several months. The first part of this post is about my family's journey. I have the honor of sharing Tara's words about her family in the second part of this piece. 

Our ttts survivors 

Dave and I found out the same month we moved in our new home, on August 24th, we were expecting. We were elated to become parents and relieved since we had been trying for fifteen months. I already had an appointment scheduled for September to start the process of being tested for any infertility issues so the positive pregnancy test meant even more after stressing for many months.

Fast forward a few weeks later and we found out we were expecting triplets but we were not able to confirm if they were identical until our MFM appointment at eleven weeks. I wrote about this in one of my prior posts but the diagnosis of Monochorionic/Triamniotic triplets comes with a long list of worries. The main concern was a disease I had never heard about but would ultimately change the course of my life.

The disease is called Twin-to-Twin Transfusion Syndrome. In our case it would be Triplet-to-Triplet but either way it is usually referred to as TTTS. TTTS is a serious disorder that occurs in identical twins and higher order multiples who share a placenta. This occurs when the blood vessels of the babies’ shared placenta are connected. This results in one baby (this twin/triplet is referred to as the recipient) receiving more blood flow, while the other baby (this twin/triplet is referred to as the donor) receives too little. (source: americanpregnancy.org)

I tried to push the thought of TTTS out of mind because I wanted to take my doctors advice and not worry about it until it was necessary to worry. Most first time moms might stress over which stroller they are going to buy or which crib would be the perfect addition to their dream nursery. But I was in the rare category of combing over articles and support groups to see how mothers of higher order multiples care for their children all at the same time. Each time I would read a new blog about identical multiples I feel like the acronym TTTS would pop up. I look back now and realize I was naive but I feel like all first time moms can be since we have no clue what to expect from a pregnancy. 

We found out we were having girls in mid-November when I was almost sixteen weeks along. It was the best doctors appointment we had so far because all of the babies were doing extremely well. We had a scare at our eleven week appointment but the issue turned out to be nothing and we were so relieved. Dave and I felt like we were on cloud nine when we left our MFM's office knowing we were expecting three little ladies. 

I remember waking up on a Sunday morning the week after we found out we were expecting girls. I felt extremely pregnant. I was constantly sick but this was a different feeling. I felt huge. I brushed it off as what is expected when you're pregnant with triplets. 

The next morning I felt even larger. Dave noticed my increased size too. The crazy part was when I arrived Monday morning to a meeting at my school, my principal looked at me and gasped, "Wow! You have really popped! You look so much larger than you did when I saw you last on Friday!" She made the remark so kindly and out of pure excitement but it stuck with me and I made a mental note to ask my doctor about my sudden weight gain at my appointment on Wednesday.

I did not even make it to school on Tuesday. I woke up feeling sore, uncomfortable, and exhausted. I was feeling pretty sorry for myself thinking if this is what its like being eighteen weeks pregnant with triplets then how was I ever going to make it to our goal of thirty-two weeks? I was relieved to already have our appointment scheduled the next day with our MFM. 

I felt like my size had increased again the next morning. I was shocked to see I had gained  twelve pounds in one week when I was weighed at the doctors office. I had not gained much weight yet due to my extreme morning (noon and night) sickness so the nurse was even surprised. She jokingly said I must have gained back my appetite and I told her that was the strange part because I was still  sick multiple times per day and had not been able to increase my food consumption.

Once the ultrasound began I could almost instantly see something was off. Our baby B, elle, looked stuck at the top of my uterus. She was usually a little jumping bean but she was barely moving. Our amazing ultrasound tech immediately called for our MFM doctor to come and look at the ultrasound screen. Before she left the room she asked me how I was feeling and I told her I was miserable and felt huge. At this point, even having the ultrasound done was causing me intense pain. Our doctor came in and confirmed TTTS had started because elle barely had any amniotic fluid left and emmy and Ashely had way too much. All of our girls were in jeopardy. elle's bladder had already disappeared. I felt like I could barely focus on anything the doctor was saying because I knew what this diagnosis meant for my precious girls. If we did not have the Laser Ablation Surgery then I would 100% lose all three of my children. 

Our doctor acted quickly because the next day was Thanksgiving and he was concerned he would not be able to get in contact with the fetal surgeon in Miami who would hopefully perform the surgery, Dr. Ruben Quintero. Dr. Quintero is one of the pioneers of the Laser Ablation Surgery to correct TTTS and he created the staging system which shares his namesake. We were diagnosed with stage three TTTS. To help you understand the severity of our situation, there are only five stages. TTTS is a disease which escalates quickly. We were entering stage four by the time of our surgery the following week. The reason I felt so large was because of all the extra amniotic fluid surrounding emmy and Ashley. In less than two weeks I went from measuring on target at my seventeen week appointment to measuring thirty-nine weeks pregnant when we arrived in Miami. My body would start to go into labor soon because it would naturally think it was time if the surgery was not completed and fluid drained from emmy and Ashley's sacs.

The series of pictures above were all taken the same week. I am sharing this to show how much I changed within a week due to ttts. 

I was admitted to Presbyterian hospital the day before we flew to miami to be cleared to fly to florida. you can see here my stomach was so swollen it was turning red due to ttts and all the extra amniotic fluid. 

I cannot imagine what my life would be like now if we had waited any longer for the surgery. 

Thanksgiving day of 2014 was an awful and whirlwind day for my family. We were trying to make travel arrangements and pack to leave for Miami to hopefully qualify for the surgery if it was not too late for my girls. I remember praying harder than I ever had in my life for my babies to hold on for just a few more days until we could be seen by the incredible surgical team. 

Next door at Don and Tara's home a completely different but joyful scene could be found. Their prayers were answered when she found out on Thanksgiving day she was pregnant. 

We left for Miami trying to be optimistic about the surgery and praying for the best outcome for our triplets. Unfortunately, we flew back from Miami heartbroken and mourning the loss of our daughter, Ashley.

The exact same morning we flew back from Miami is when Tara and Don were given the shock of their lives. The next part of this post is written by Tara. She is one of the strongest mothers which I am proud to be able to call not only my neighbor but my friend. 

The Gemmell Family- Don, Tara, Kylie, and their BEAUTIFUL RAINBOW baby, Berkeley 

TTTS can be a devastating and traumatic diagnosis; I hope by sharing our story we can raise awareness and offer hope and support to other families. 

It was December 6, 2014 when we found out we were expecting identical twins. I remember the car ride home vividly. Chatting about how our lives were never going to be the same again. Not knowing how true this statement would be just five short months later. 

I was diagnosed with stage one TTTS at sixteen weeks and at seventeen weeks we were told it had progressed to stage three. We were escorted from the ultrasound room to a small room down the hall to wait for the doctor to arrive in the office and discuss our options. Dave and Jess had shared their story with us months before so we were aware of what we were faced with which made our discussion with the doctor a bit easier (not that any part of this was easy, but at least we had a little prior knowledge). 

Our MFM gave us three options, however, in our minds we only had one. We knew in order to give our girls the best chance of survival, we needed to have Laser Ablation Surgery.  TTTS progresses quickly so surgery was scheduled for the very next morning. 

The next twenty-four hours were a whirlwind of emotions. We arrived at the hospital at five am and were off to surgery by seven am.  The procedure would be approximately forty-five minutes and I would be awake on the operating table the entire time. Fast forward three hours later and the doctor finally called it. She did all she could do but my placenta was so complex that she wasn't confident all the connecting blood vessels were severed. Now it was a waiting game. We continued with bi-weekly ultrasounds with no changes to be reported the first two weeks. Three weeks post surgery we had signs of improvement, but the very next weeks ultrasound showed the surgery was not a total success. Our recipient twin was showing signs of progressing heart failure.  

At twenty-four weeks I was admitted to the hospital for steroid shots to assist the babies lungs since we knew we would deliver early. I was also being continuously monitored and received daily ultrasounds and echocardiograms. Our MFM informed us there was no hope for our recipient to survive long after birth. Her heart had become so swollen from pumping all the extra fluid that her lungs did not have room to fully develop and therefore once the girls were delivered she would only survive for a short period of time. 

I have never prayed so much in my life. I begged and pleaded with God to save my babies and at twenty-five weeks and three days he did, in a much different way than we were hoping. I received my daily ultrasound which indicated the recipient twins heart failure had progressed so far that we needed to make the call to deliver immediately for fear that if she passed while in the womb our donor baby would also pass due to still having connecting blood vessels. 

On April 28, 2015 we successfully delivered Kensington Faith (2lbs 4oz) and Kylie Grace (1lb 7oz). We were blessed to have Kensi with us for 48 minutes and it is answered prayers that we have Kylie here today. 

Kensi is truly our hero for hanging on until the point of viability, saving Kylie's life. It is in their honor that we raise awareness by sharing our journey through TTTS. 

Ephesians 2:8 

For it is by grace you have been saved, through faith

To learn more about TTTS, especially if you are currently pregnant with identical multiples then please visit, the Fetal Health Foundation. 

Kylie, Berkeley, and angel wings in honor of Kensi 

Emmy, Kylie, and elle in december of 2015 after we appeared on the local news to raise awareness for ttts

our ttts survivors enjoying halloween activities together