This post is a clear departure from my usual nonsense, but it’s important to me for reasons that will be terribly clear. My story ends happily. It ends with the last 12 years of laughter and dirty, loud chaos that only boys can bring, but I came horribly close to an outcome too terrible to consider.
After finding out that I was carrying identical twins in my 18th week, it wasn’t long after, at 22 weeks, during a routine ultrasound, that a significant problem was discovered. Because, most of the time, identical twins share a placenta, a large number of problems can arise, and in the case of my sons, they were not sharing it equally, and had an “Asymetric Placental Share” or “Discordant Growth”. They were 18 days apart in size, and we were told there was nothing to do, but go home and wait two weeks for another ultrasound.
They had clearly never met me.
I quickly discovered that what was happening was highly dangerous, and that what we were seeing was the beginning of a condition that can quickly become TTTS, or Twin to Twin Transfusion Syndrome; a condition that, if left untreated will kill 80-100% of the babies it effects, with the few survivors having a high rate of severe disabilities. After spending 24 hours sobbing in a ball, on my bathroom floor, I slowly came around, realizing that SOMEONE, SOMEWHERE had to know what to do about this. I got online, and contacted the TTTS Foundation, located in Wisconsin, begging them for advice.
It wasn’t 8 hours later, that I was contacted by Dr. Julian DeLia, the head physician, and a renowned expert on this condition. He asked for my phone number, and told me, he’d call me from home that night. He did, and during that phone call he laid out a course of action for my physicians to follow, here in Phoenix. Dr. DeLia, during that first phone call, gave me hope. He told me that the only thing I could aim for, was to get them to survive past 30 weeks, so they could be delivered with significantly lower chances of death or disability.
I immediately went on a leave from work, beginning a course of 14 weeks of bed-rest, that included nightly hydrotherapy to increase circulation, and an intensive diet, that involved eating every ounce of protein that I could find, with cans of Ensure between them. If my smaller twin wasn’t getting enough nutrients, he said, let’s push as many as we can. At my next appointment, the day before Thanksgiving, the doctors here were thrilled to find that my sons were now only 8 days apart…an ENORMOUS improvement, and reason to truly be thankful.
Every day, every minute was terrifying. Every time I woke up, I’d hold my breath, waiting to feel both of my sons move, so I’d know they were okay. The only minutes of peace I had, were when I was in the middle of an ultrasound or stress test, and I could see that they were alive and doing well. Every week or so, Dr. DeLia would call to check on us. He prayed for us every night with his family. He wasn’t my physician of record. He never sent me a bill. He didn’t expect a dime, and I certainly wasn’t his only patient. He just honestly CARED about the outcome of a complete stranger, who needed expertise that he was able to give.
My sons were born 30 days early. They were two pounds apart in size, weighing just over 6 and 4lbs, respectively. The difference between them was a full pound more than the last ultrasound, two days before had suggested, and my larger son was born bright red and puffy, a sure sign that my condition had shifted into the territory of TTTS, and he was now full of more blood than he should have received. Had I been pregnant another 24…48…72 hours…they both could have died before they even had a chance to be born.
Because of the excellent medical advice I’d received, from a doctor whose foundation works tirelessly to give advice and help to people in my situation, my sons were born perfectly healthy. We were lucky.
Still, TTTS kills more babies annually than SIDS. One in six identical twin pregnancies results in a TTTS diagnosis, which even with invasive surgical treatment, can only increase the chances of the survival of both twins to 60%, and one twin at around 90%. More HAS to be done, and not just for babies with TTTS, but for babies with all manner of diagnosis.
Since our run-in with TTTS, I’ve had two people close to me also diagnosed, both with more aggressive forms, requiring surgery, and with both losing one of their sons. Every day, I am grateful for my sons. I am grateful that I never have to look at one and wonder what his brother would have been like, because that hell was spared me, and I would do ANYTHING to change the outcome for my friends or any stranger going through this. No one deserves that outcome…no one.
This month is TTTS awareness month, and I want to do my part by screaming from my little place in the internet, so more people know, and so, maybe, more people find the right people to help them. If you or someone you know is diagnosed, there IS hope. Please contact The Twin-To-Twin Transfusion Foundation. They will help you find physicians nearest you who have been trained to treat this condition, and who can give you and your children the best possible chance.
Hugs. Thank you for indulging me.