Tuesday, September 14, 2010

My own TTTS story.

Well, in 2007 I was on the pill, so I wasn’t really panning for more children. But, I would still like to get pregnant in nine months form when we found out about the twin pregnancy. I had to deal with fertility treatments to conceive our daughter; I wished that I could eventually get pregnant with out medicinal help. During that time I had 2 early miscarriages. It almost brought me to the breaking point. My husband was great through it all. Evidently my wish came true.

Then in Januarry of 08', I had that feeling I was pregnant, but was unsure. I never asked what the HCG results where. I figured that after being thru infertility treatments with my previous pregnancy, if the doctor wasn’t alarmed by the results that I shouldn’t be either.

I can remember at 9 weeks I was showing, I was concerned by it but just brushed my size off (I'm a little on the + side of things). This was my second pregnancy after all. I considered the thought of twins, what were the odds. I was just so happy this was a “normal” non high-risk pregnancy. The NP didn’t think much at this point. She figured that this being my second pregnancy that that was the reason why I was bigger. I asked for an ultrasound, but she wouldn’t do one, she made me feel like I was a crazy woman. It was horrible being treated like that.

Then at 13 weeks . I couldn’t believe it I was huge! My first ultra sound. The ultrasound technician asked, “How are you doing?”
I replied happily, “I am just so relieved that I can enjoy this time, that this is not a high risk pregnancy.”
She looked at me and said, “You don’t know?”

I said, “Know what? “
She said, “You are having twins!”
I was in shock for a good hour. I was thinking that I was on the pill, could I even handle two babies plus my daughter? But I wanted them with all my heart, and for them to be healthy. My aunt has identical twins, if she could do it, I thought so could I! They mentioned that I would be watched, and we need to make sure that the issues that comes from twin pregnancies are identified early, but I was just floored.

At 16 weeks we had another ultra sound. This ultrasound went fine, no major issues; they didn’t say anything was wrong. I found out why I wasn’t feeling my babies move. My placenta was located on my belly so it was acting like a cushion, or a barrier between us. It is called a anterior placenta. I really wanted to feel them even if I would be kept up late at night from them moving. Then I would know they where fine. But we are having two boys. Their names would be Vincent Sterling & Thomas Matthew.

Then at 18 weeks everything came to a grinding halt. The doctor came in, and said our boys had TTTS. My world just shattered, I was so scared. I didn’t know what it was. My husband wasn’t with me; he had to work that day. I thought to myself, "How could I tell him we had a problem?". I wanted my babies to be healthy, to be safe. I wondered what was happening, and why? How can they be saved? Could they really lead a normal life? And I kept wondering if I would be able to hold them. Watch them grow, kiss their bubo’s away, and wondered if I would even get that simple parents right to hear their babies cry for the first time? I knew I had to deal with this some way. I was put on bed rest for the remainder of the pregnancy. I was referred to CHOP to treat this condition.

With in seven days of being diagnosed we found our selves at the Children’s Hospital of Philadelphia (CHOP) after a long day of tests, ultrasounds, and doctors poking and prodding me. We received terrible news. We found out at the end of the day, that the boys had a 30 % size difference between them. On the ttts scale our boys where a two. And the recipient baby’s heart condition was a four on the 20 point scale. We where given 5 options. One was to could kill both, the second kill one and hope the other would survive, third try the laser surgery, forth try amnio reductions, or fifth do nothing and loose both in a matter of weeks. We wanted them, we where here for two babies. We could barley wrap our heads around it. But if we did nothing we would lose both in a matter weeks. We where just crushed.

During the 20th week, We chose to do the laser surgery. We where told that they might not be able to do anything. The placenta being located on my belly, made it very difficult to even get the scope in there to see everything. And if they got the scope in, could they even see what they needed to save my sons? It was one of the most horrific surgeries I have ever had. You have to realize the sheer size I was. I looked like I was a full trem mommy. The doctors at CHOP, even joked that I would carry to the surgery date. They thought that I would have gone into labor at this point.

But, they ultimately couldn’t complete the laser surgery due to the anterior placenta. They took out 3.66 litters of fluid from the recipient’s amniotic sac. During the surgery they where only able see was the recipient cord and the separation point of where the 2 placenta met. They could not even see his cord incursion. All we could try was amnio reductions or selecting the recipient baby to be killed, and hope that the donor would survive. The doctors gave us time to make the decision. Then 4 days after the surgery, our final visit to CHOP. Our donor baby was now 40% smaller then the recipient baby. The recipient’s heart condition is now a 5 and on the 20 point scale we are still a 2 on the Quintero stage. We couldn’t choose to kill the smaller baby, he was our son, and we believed as a parent you need to protect your child no matter what. Even if we selected him, the other could die, and could we live with our selves with knowing they could have made it if we just left them be.

We had a conscious amnio reduction. They took 2 litters this time. The recipient’s heart condition was now a 6. The amnio reductions were so painful. As they drained the fluid, he began to move and kick. So as my uterus was contacting to become smaller, he was trying to take up more room. It felt as if I was in labor. I though to my self, could I be loosing both now? They put me in a room to track my contractions. I stayed there until they stopped. Thank God, my sons where still ALIVE!

The doctors recommended another amnio reduction. They took another two litters, bringing the grand total to 8 litters. The recipient twin was sleeping so the pain wasn’t too bad. Yes it hurt but much nothing like last time. The recipient’s heart condition was now an 8, and on the TTTS scale we are now a 3. The doctor after the reduction admitted me in the hospital. I expected to be hospitalized at 24 weeks, so it wasn’t a shocker to me. If we could hold off delivery for 1 more week, our recipient twin (the larger one) would have a shot for a possible life. The smaller baby (the donor) would need another three to four weeks. To be honest I didn’t think this could keep going at this rate for that amount of time.

We had an ultrasound early that first full day in the hospital. We could see a reverse flow of blood in the recipients cord. We could either deliver them now, or let the recipient die inside me, and hope that the donor would survive. We chose to deliver; the doctors used less pain medications during the c-section, so the babies would be awake for the NICU staff. Half way through the c-section, after the boys where out, I regained feeling, I could feel them sewing me up, but I didn't budge. yes it was so painful, but I knew it was for my sons, maybe my pain would make them stronger, I really don't know what I was thinking dealing with it like that. Once the doctors realized what had happened they drugged me up, thing began to get very fuzzy. I do remember my husbands face. He looked like he was in shock, that I was dealing with all of this pain and not even flinching. It's a look I'll never forget.

But happily at 3:24 both of our boys where born by a classical c-section. The Recipient baby, Thomas Matthew Bruch 1 lb 3oz, 11.5 inches long, he cried when he was born, and the donor baby, Vincent Sterling Bruch 11 oz. 10.25 inches long. We where only 24 weeks along in this pregnancy and they are already born, I had to now put my faith in the NICU team and just wait. They where here and I was still helpless. Looking back I can remember lying on the OR table, and a nurse commented on how small my twins where and then the doctor telling her to be quiet.

My very first visit to the NICU for my own children is one I will never forget. I was there before years ago seeing a friends’ child. I looked around and I saw 30 babies, all on an assortment of machines. I was taken over to two isolates. My boys where so small, but they were alive. Vincent was 11 oz., Thomas was 1 lb.3 oz. they gripped my finger. I even heard Thomas cry, a 24-week baby could cry, some 34 week babies can’t even do that! I saw each of their chests rises with each breath they took, and their tiny hearts where quickly fluttering. My boy’s where each on oscillators that helped them breathe. They where small, but they where mine.

Thomas was doing so well. He did everything that the NICU needed him to do. He had two nursed dedicated to him 24/7. Thomas was on the machines and was taking his own breaths, yes he had the ventilator, but most of his breathe where his own, not the machines. He would move when he heard our voices. He could smile, and make facial expression. He never looked like he was in pain. He was our fighter, our hope. And he was doing well. I would call or visit him every three hours to check in. but I began to feel like I was forgetting my daughter. How can you parent 2 children when one child is in the hospital and the other is visiting with family members?

Vincent lived for one day, Thomas lived for five days. Vincent died from the shock of being born to early, he was just too small. Thomas put up a great fight.  After they died, I would wake up feeling my belly, and wishing I were still pregnant. I took me 7 weeks after the joint funeral to start to feel the emotional pain of it all. It was like walking in a fog, you are unsure of where you’re going. I saw a therapist, and went to group therapy for neonatal loss. I had to come to grips with the physical and emotional side of the losses. Through this I lost my own identity, struggling with the question “Am I still a mother?” Thank God to “Now I Lay Me Down To Sleep” they are angels.

You have to realize, that I now expect people to not know what to say to me. A normal person usually does not deal with this everyday. I have the jewel kids on my necklace. I have one for each of my children. But I will always hate seeing the “deer in the headlights look” I get every time when they ask, “How many children do you have?”

I just simply tell people, that I like to talk about my sons. They are a part of my family but in a different way. So if they are uncomfortable, then they need to speak up, other wise I will continue to talk. 

It took me over 13 weeks to fully realize the emotional drain TTTS took. I didn’t go back to work until after my due date. Every day was a challenge, my emotions never went away, and I just learned how to cope with them better as time went on.

1 comment:

  1. U are very strong Erin!! Everytime i read ur story, it breaks my heart!! i'm glad ur fighting to make this book happen and it should. People need to be aware of TTTS. Ashley O.