Week 18-21: Month Five pt 1
Week 18-21: Month Five pt 1
These next few weeks were the best and most challenging thus far..
January, being my birthday month, is always a special time in my life (really just an excuse to party excessively without judgement). Of course this year was different. I feel so happy and content with life, I truly didn’t want or need anything more. My husband and I tried so hard for these little babes, what else do I need :)
Nevertheless, with a holiday weekend, and not knowing how much longer I will be able to travel due to tummy size, and evolving covid travel restrictions, we booked a trip to St.Thomas in the US Virgin Islands. Territory of the US, white sand beaches, and my bff was going with her boyfriend. Great couple of days out of the city. The best getaway my husband and I had in awhile; very tropical, very romantic.
Back from vacation, and the doctor visits start. I have my fetal echocardiogram appointment. Both of their hearts are functioning correctly, with an average heart beat. The doctor does mention Baby A (the larger twin) has less blood than Baby B, but it should be nothing to worry about and she will let my doctor know. The report from my doctor says the numbers look fine.
Another anatomy ultrasound on Monday, and I knew something was wrong. After collecting all the images, the tech came back in and said she must have switched up the labeling of Baby A and Baby B because Baby A was coming up as the smaller twin. Some more photos later, she left the room and the doctor came in to take a look at the images herself. Yup, they could see something bad on the monitor.
In the conference room, the doctor tells me the twins have TTTS, stage 3.
Twin-to-twin transfusion syndrome (TTTS) is a rare pregnancy condition affecting identical twins or other multiples. TTTS occurs in pregnancies where twins share one placenta and a network of blood vessels that supply oxygen and nutrients essential for development in the womb.
Sometimes the vessel connections within the placenta are not evenly dispensed and there is an imbalance in the blood exchange between the twins. One twin — the donor twin — gives away more blood than it receives in return and runs the risk of malnourishment and organ failure. The recipient twin receives too much blood and is susceptible to overwork of the heart and other cardiac complications.
There are five stages of TTTS:
Stage 1: There is an imbalance of amniotic fluid, with a small amount around the donor twin and a large amount around the recipient twin. The twins are often more than 20% different in size.
Stage 2: The bladder of the donor twin is not visible or it does not fill with urine during an ultrasound exam.
Stage 3: The imbalance of blood flow starts to affect the heart function in one or both babies. This is seen in abnormal blood flow in the umbilical cords or hearts of the twins.
Stage 4: The imbalance of blood flow causes signs of heart failure in one of the twins.
Stage 5: One or both of the twins has passed away from severe TTTS.
As you can imagine, this was a ton of information to process. I was speechless. The only question I could ask was, “what is the solution”. Thankfully, living in Manhattan gives access to the best doctors and hospitals in the country. Only 13 hospitals have the experts and equipment to perform the corrective surgery -- endoscopic laser ablation. This is performed in utero and can correct the blood-sharing imbalance caused by TTTS. Separating the twin blood flow is like functionally separating the placenta, allowing each twin to develop independently. I was told to go home, wait for a call from Columbia Children’s Hospital uptown, and prepare to spend the night at the hospital.
I was in a daze leaving my appointment. I did not know what to do, where to go, who to call. I ran to my bff's house, woke her up, and cried on her living room floor. After 30 minutes, I had a better understanding and grasp on the situation. I called my husband to let him know what was happening, and waited. The hospital called within the hour, and I went for my consultation. After another ultrasound, it was confirmed, TTTS, stage 3. Emergency surgery in the morning, spend the night in the hospital, ultrasound in the next morning to check on how the twins did.
Laying in the hospital suite after surgery, all I could think about was how this happened, how could it have been prevented, what did I do wrong..? The surgeon, my doctor, my day nurse and Google, assured me that nothing I did caused this. It was just the way the twins implanted, how they grew, and where their placenta was. Completely out of my control. A part of human anatomy, it could not have been prevented or proactively controlled. Only reactive measures could take place with TTTS, and I was doing all I could to help the twins.
I felt some relief that night knowing we caught it just in time before stage 4, we are following recommendations from some of the best doctors in the world, and I am not a bad mom for this to have happened.
More to come about the procedure, results and follow up..
cbxo
