Today we share my friend Brandi’s story. Her sons Brady and Brenden are thankfully both with us, but it was a difficult journey none the less! She also had an anterior placenta and had the surgery. (For those of you that are new to the blog, I did not have the laser surgery because my doctor told me I was ineligible due to an anterior placenta.) So I reiterate – make sure you get in touch with a TTTS expert if you or someone you know is diagnosed with TTTS!
Thank you so much Brandi for sharing your story and your boys with us as we spread awareness!
Brady and Brenden
On March 16th I had to see a high risk doctor for the 1st time. We were assured the only reason we had to see this doctor was because we were having twins and a multiple pregnancy is automatically high risk. At that appointment we got to see our tiny babies on another ultrasound and we found out that they were identical and sharing a placenta. Dr. Bansal mentioned the possibility of something called TTTS and told us it was only a 15% chance of our babies getting it so we weren’t to worried and didn’t really share to much about TTTS with our families. We figured since the chance was so low that we shouldn’t stress over it at this point.
A few weeks later, on April 13th I had another ultrasound. Ben and my mom went to the appointment with me because it was the day we were going to find out if our babies would be girls or boys. I knew I would love them either way but I hoped and prayed with every ounce of my being that I would hear the word BOYS!! The ultrasound tech began the exam and within a few minutes she looked at Ben and said “do you see that?” And we knew what that meant!! She said “Baby A is a boy and even though Baby B is being shy we know he’s a boy too!” I immediately began to think of how excited my daddy would be and how I was going to tell everyone! I could barely contain my excitement!
Brady & Brenden are the 1st boys in my family in a LONG time! When they were born it was 24 years on my dads side since there had been a boy and 47 years (i think) on my mom’s. I just couldn’t help but feel even more blessed at that moment. Through all of the excitement I wiped a tear from my eye thinking how happy my Papa would be to have twin great grandsons and my heart was saddened that he would never know them and they would never never know him as he passed in 2007. But I knew they had a guardian angel watching over them.
A little bit after we found out they were boys the ultrasound tech told us she was done and had to go get the doctor. We thought nothing about this because at our 1st appointment he came in and looked at the boys as well. When Dr. B came in he had a distressed look on his face and he looked even more worried the longer he looked at the boys on the ultrasound. After he was done he told me that we were dealing with TTTS. He informed us that it was a pretty severe case as our Baby B didn’t have a visible bladder. He explained that basically our Baby B who was the donor was giving all the nutrients, bloodflow and amniotic fluid to our Baby A who is called the recipient. The boys didn’t have names at this point.
So he went through the options for treatment with us. He explained that they do a procedure called amnioreduction which removes the excess fluid from the recipient and would increase his chance of survival, however since our donor was so “sick” it would more than likely not do much to help him. He also told us that we could terminate our donor in order to save our recipient or terminate the entire pregnancy. He wasn’t for termination but he had to offer it to us.
He said we could do nothing and let nature run it’s course and face an almost 99% chance of miscarriage of both babies. And last he told us about a laser surgery that could reverse the TTTS is successful and increase the survival of both babies. As we sat in his office that day in tears and complete fear of what would happen to our babies we knew that we had to fight for them.
In our opinion terminating one or both was giving up on the fight. We knew that no matter what that wasn’t an option for us and the only option we could choose was the laser surgery. It was the only option that could give BOTH of our babies a chance at the life they deserved and we wanted them to have. We told him that our decision was the laser surgery. He explained that no one in the Atlanta area did the surgery and we would have to travel to Cincinnati Ohio in order to have the procedure done. At that moment in my life I had NO IDEA where Cincinnati was, how long it would take us to get there, and how in the world we would get there at a moments notice as we hadn’t been planning on taking a trip.
On Sunday April 17th we got up bright and early to head to Cincinnati. We drove because my doctor didn’t want the added stress of the airport and a plane ride on me since I had never flown before. We had to stop every hour in order for me to empty my bladder regardless if I felt the need to or not. By doing this it helped keep pressure off of my uterus and cervix to help keep me from contracting.
On Monday the 18th I went to Cincinnati Children’s Hospital in order to have testing done. It was a long day! I had to have an EKG, MRI (for the babies) Echo (on the babies) blood work and we had to have a meeting with the doctor’s to make sure I still qualified for the surgery. They told me I was a stage 3c at this point and needed to do the surgery as soon as possible. However I couldn’t have it until Thursday because I had just had a cerclage. I returned to the hospital on Thursday April 21st at 18w3d for the surgery to save my boys. I was prepped for the surgery and went in as bravely as possible by myself to have the procedure done.
We were told the surgery could take anywhere from 1-3 hours. My mom, dad and Ben waited for information from the doctors in the waiting area. The surgery went much faster than expected. the doctor’s thought it would be difficult because I had an anterior placenta which can complicate the surgery and getting the laser where it needed to be in order to laser the connections. Brady & Brenden had 10 connections that were lasered and they poked a tiny hole in the membrane that separated them in order to help the amniotic fluid to even out between the boys. My family was terrified when the doctor came out to tell them the news so soon but they were quickly calmed when the doctor told them the surgery went as well as it could have and that I and both babies were doing fine at that point.
Then the wait began. All we could do was wait until the next morning in order to see if both boys survived the surgery. I got really good during this time in my life at hiding my fear and trying to stay strong and positive. I didn’t sleep much that night. I was so concerned with making sure I could feel movement in my tummy. I laid there in that hospital bed watching my husband sleep wondering if we would leave that hospital as a family of 4 like we came, a family of 3 or my biggest fear, leaving as a family of 2. That was the longest 24 hours of my life.
The next morning the nurses came in, put me in a wheel chair and wheeled me to the ultrasound room. The tech began the scan and I very impatiently waited to see and hear heart beats. I was relieved when she said “there is baby a” and I cried tears of joy when she said “and there is baby b” WE DID IT!! We still had two strong heart beats!!
But my days in Cincinnati weren’t over. I was sent back to the Ronald McDonald House on bed rest until the following Tuesday. On Tuesday April 26th we went back to the hospital for another follow up. We had several test that day as well. And we still had TWO heart beats.
At this point my fear was starting to ease. We were cleared to head back home the next day.
Upon arriving home I was on strict bed rest, which I often referred to as “House Arrest.” Just imagine for a minute being put on bed rest when you weren’t even 1/2 way through a pregnancy. Imagine Laying in the bed or on the couch day in and day out wondering if your babies were still alive. Many people think that the surgery fixed the TTTS and my worries were over. That is so far from true. I had to have an ultrasound weekly to make sure they were still ok.
On June 16th I got up to get ready for my every Thursday doctor appointment and found that I was bleeding. I yelled for my mom and we immediately went to the doctor. I was admitted into the hospital that day for preterm labor. They started magnesium sulfate in order to stop the contractions and labor. I was informed that I would be there until I delivered the boys, didn’t matter if it was that day, the next week or two months from then. I hated the thought of being in the hospital that long but I was willing to do whatever was best for my boys and I knew that the hospital was the best place to be.
That night was rough. Magnesium is horrible, it made me sick and I felt like I was on fire. It was the middle of June & people were wearing coats in the room with me because I had it so cold so I could be comfortable and I was still hot!! The Mag worked!! My labor stopped and I was taken off the IVs. I felt wonderful. The boys were being monitored around the clock. I could hear them move and hear their hearts beating. For the first time since my TTTS diagnosis I knew they were ok and I could sleep without fear.
Unfortunately, the Mag only held off my labor about 36-48 hours and it was coming back. This time I felt the pain and contractions a lot stronger. They hooked the I with the Mag back up and started the process over. It took a little longer for the pain to stop this time but in time, it did. I felt like a million bucks again.
I began having pain again that night and yep! You guessed it here comes the lovely Mag and Ivs again. Ben was hesitant to leave since I was having pain but once again I assured him I was fine and my mom was there. So he left. I was in a lot of pain that night and the pain meds they were giving me wasn’t helping. Ben called me at 5:30am to make sure I was ok and if he needed to come to the hospital or if he should head to work. I told him I had a painful, sleepless night but I thought I was ok and sent him to work. It was about 8am when I decided something wasn’t right and had my mom tell the nurse to get my doctor.
The doctor sent in a midwife who checked me and informed us I was already a 8, he told my mom she’d better get my husband on the phone and get him there quickly. So my mom frantically called him and everyone else. He got there just as they were taking me to the OR, he changed and ran in to be with me!
They were born 6/24/11 at 27 weeks. Brady Michael was born at 9:57am at 2 lb 2 oz and Brenden Ray at 10:04 weighing 2lbs. Both were a tiny 13 3/4 inches.
The boys spent three months in the NICU before they were able to come home on 9/24/11.
Although I knew we were being discharged, I had the urge to RUN out of the NICU, like I was kidnapping my oen babies. I will admit, that thought crossed my mind a few times during their stay. FINALLY after 92 loooooong days we were leaving the hospital the was we should be leaving….as a family of FOUR!
Brady & Breden are my everything. They are now crazy 15 month old boys that are full of life and energy and into everything and I wouldn’t have it any other way. Sometimes I catch myself staring at them while they play together and it brings all the memories of my pregnancy and NICU back to me. It reminds me how lucky and blessed they are to have each other and how blessed I am to have them. I am reminded of my fight and the fact I was told IF they survived they would more than likely have life long disabities and once again I think “WE BEAT YOU TTTS, TAKE THAT”
My boys are healthy but there are many moms that went through what I did that didn’t get my happy ending. Babies lose their lives every day to this evil thing called TTTS, with every new death I hear of and every family that has been torn apart and may never feel complete my heart breaks, I cry for them and I grab my boys and hold them even tighter. For this reason my fight with TTTS will never end. Until there is a cure for TTTS I will FIGHT TTTS forever!!