It’s been awhile since I’ve shared about Twin To Twin Transfusion Syndrome (TTTS) on my blog. Since that’s why it all began, it seems only right to share periodically. Additionally, the TTTS Support Team is trying to raise some funding for some projects, and I’d like to highlight their efforts. (More on them at the bottom.)
First, Kathryn and Tiny’s Story:
Our daughters are monochorionic-diamniotic (Mo/Di) twins – one placenta, two sacs. Twin to Twin Transfusion Syndrome (TTTS) occurs in roughly 15-20% of Mo/Di twins, and sadly is the cause of more deaths of babies each year than SIDS, yet it is still relatively unknown and often not treated when and how it should be.
We were officially diagnosed with TTTS at 20W and 2 days during our regularly scheduled Anatomy ultrasound (U/S). Baby A (Kathryn) was 50% too large at the time and Baby B was 50% too small. Their weight differences were 100% (16 oz and 8 oz.)
Sadly, as I begged my OB to tell me what we could do, she doctor told me “nothing could be done” to save them. And then she admitted me into the hospital. That day as they wheeled me to Labor and Delivery, I thought I was losing both of my babies. I am sure half of the hospital heard me wailing and sobbing as the Medical Tech wheeled me across the hospital.
Thankfully, that doctor was wrong. And since then I have come to realize that many OB/GYNs know very little about Twin to Twin Transfusion Syndrome and because of this lack of knowledge, babies are lost.
September 28, 2011 I was hospitalized immediately. The next morning the Maternal Fetal Manager (MFM or high risk OB/GYN) visited me and began to tell me about our options.
- We could do nothing, and both babies would die.
- We could proceed with an amnio reduction (reduction of the fluids in the amniotic sac to try and return the babies to a normal balance) or …
- there is an option of laser surgery. However, the doc told that due to the fact that I had an anterior placenta (on the front of my abdomen in front of my belly button), we were ineligible for the laser surgery, so our only option was amnio reduction. (Turns out this was also incorrect information – many women with anterior placentas are able to pursue the laser ablation surgery. Some have success, some do not, so I do not dwell on this bad information.)
So on Thursday September 29, 2011 we had our first amnio reduction at 20w3d. It was amazing to watch. It was somewhat uncomfortable to have the large needle inserted into my abdomen, but it was cool to watch the babies. For almost an hour they withdrew fluids out of Kathryn’s sac. Kathryn tried several times to grab the tip of the needle. It was cute. 500 ML of fluid was removed from Kathryn’s side of the sac.
Over the next several weeks we held our breath as we waited for time to pass. The doctors told us we had to make it to 24 weeks to even be considered viable, and at that point, that needed to be our main goal. I went on bedrest (as much as a woman with a four year old and an 18 month old can be!) and we visited the doctors every week for ultrasounds. Amazingly, the babies stayed stable. Kathryn’s hydrops (fluid building up around two or more bodily cavities) did not go away, but it remained stable. Baby B was growing very slowly but she continued to grow, her bladder continued to be visible, and although she was “shrink wrapped” in the membrane separating the babies, she was not “stuck.” Her fluids stayed right around 2-3 CM, which was an acceptable amount and allowed her to continue to get nourishment, albeit very little.
At 24 weeks we took a turn for the worse. Kathryn’s heart was worsening… the tricuspid valve was no longer functioning, and the fluid continued to build tremendously. Her abdomen, at 24 weeks measured the size of a baby at 32 weeks gestation. Baby B was still too tiny to be viable, and this was a scary day. We were once again admitted to the hospital, and this time, since we were at the 24 week point, I was put on magnesium sulfate (AWFUL!!!!) and given steroid shots to help prepare their lungs. Three days later, on 10/27 (24 w and 3 Days) we had our 2nd amnio reduction as well as a pericentesis… this time they also stuck a needle into Kathryn’s abdomen and withdrew over 200 ML of fluid out of her belly. The highest risk with these procedures is that they can cause pre-term labor. Also, by introducing a needle into Kathryn’s abdomen, there was a risk of destabilizing her. The little baby (Baby B) still had a 0% of survival if we were to go into labor then, (she was only measuring at 22 weeks) so we waited with great anticipation to see if the procedure would cause premature labor. Thankfully the babies tolerated it well, and I was able to go home that evening.
The following week showed no improvement. Kathryn continued to take on fluids and the little baby was growing very slowly. At our appointment on 11/1 the doctors notes stated: “Baby A has 6.6 Fluid, Baby B had 2.0”; the comment was made that “Twin A has worsening hydrops.” It didn’t look good. All of us cried (the nurse, the u/s tech, me) as the doctor began to offer us other options.
One option to consider was going to the Children’s Hospital of Philadelphia (CHOP) to have a tubal ligation – a procedure to terminate Kathryn at this point because she had such a small chance of survival and keeping her alive was threatening the chances for Baby B’s survival. Baby B was still so small, and growing so very slowly.
We said no. I was not going to give up on Kathryn, and besides, there were no guarantees baby B would survive either once her sister was terminated.
On 11/8 baby B’s fluid levels dropped to 1.2 CM. Not good. The intertwin discordance was 70.5%; but worse, reverse end diastolic flow (REDF) was identified. In a nutshell, she was starting to return fluids back (reverse flow) and this was very bad.
We were once again admitted to hospital – and this time we believed delivery was imminent.
However, the babies had other plans in mind. Over the next 32 days, I remained hospitalized on fluids and oxygen, and tons of protein. As long as the babies continued to stay stable, we were just going to leave well enough alone. We did have weekly amnio reductions, and another pericentesis (aspirations of ascites) to draw fluids from Kathryn to allow her lungs to try to get bigger. The doctors didn’t really like to talk percentages with me when it came to survival. And when they stopped talking about other options of treatment for Kathryn (at one point they were considering a transfer to MUSC so that she could have surgery on her heart after birth) I knew that they had little hope for her.
After we got to about 28 weeks and Baby B was finally over 500 grams, the doc finally started saying he thought Baby B would now have about an 80% chance of survival. He never talked about Kathryn.
On 12/10 (30 W and 5 days) I began having large contractions and went into labor. In the best interest of the babies, I had an elected cesarean following the diagnosis of preeclampsia and nonreassuring fetal heart rate testing.
Baby B was actually born first, and from then on became baby A, or “Tiny” as she is referred to in this blog. She weighed 1lb 10 oz but breathed on her own and actually cried at delivery. Kathryn weighed 4lb 5 oz (largely due to excess fluids) but was not breathing. Because Kathryn’s swollen belly took up so much room, her lungs were way too small for her body, and she had to be resuscitated and intubated.
Although they were able to somewhat stabilize her for the next 24 hours, they were unable to stop the fluid from continuing to build up, and her arterial blood pressure remained too low.
Despite a good fight, Kathryn died on day 2 of life (after 52 hours) “with complications of respiratory distress and congenital heart disease.” Her death certificate however directly states cause of death as “hydrops fetalis.”
Tiny spent 84 days in the NICU, and other than some eating issues that have since resolved, she has been doing great.
Now Tiny is a year old, and we are so grateful for her but we still miss her sister every day.
After Kathryn passed away, I received a package from the TTTS Support Team. This is a volunteer organization that sends care packages to other moms who have lost one or both babies to TTTS. The package was so thoughtful and loving, and I knew I was not alone and cared for. Now I am a part of this group. We need help in raising money to continue providing packages to the large amount of requests we sadly receive. Please visit our TTTS Support Team Fundraiser HERE.
Related Posts
Latest posts by katbiggie (see all)
- What to say when a baby dies ; words of comfort - October 31, 2019
- Try listening to her, not fixing her – October 15th - October 15, 2019
- Pregnancy & Infant Loss Awareness Book Bundle - October 3, 2019
Anonymous says
December 15, 2012 at 1:57 amThank u. For sharing this! I have 28 week old survivors. We almost lost our little baby they are stil. In the nicu you are in my prayers.
Kat Biggie says
December 15, 2012 at 5:21 pmI am so glad you have double survivors! Amazing! The NICU journey can be tough but you will get out of there eventually! Hope your babies are doing well!
Vanessa says
December 20, 2012 at 8:05 pmElli baby A is doing amazing and will be home soon her sis lilli is having issues but getting g there prayers r with u and your family
Kat Biggie says
January 1, 2013 at 1:40 amI hope you’ll have them both home soon! Prayers with you too!
Kat Biggie says
January 1, 2013 at 1:41 ammomto8blog commented on TTTS Tuesday – Kathryn and Tiny’s Story – No Holding Back:
what a story…you should write a book for mothers who are experiencing this…moms seem to help moms sometimes more than the drs..
My recent post Wordless Wednesday
katbiggie says
March 22, 2013 at 11:00 amI am definitely considering it!
Eli@coachdaddy says
July 18, 2013 at 6:45 amWhat an incredible journey, and to write about it a year after, takes the courage and strength of a mom. I hardly blinked while reading this, because I was learning and feeling all at once, and as you know, that’s hard to do in a blog. Thank you for sharing this story, for educating us, and putting a bit of Kathryn in our hearts, too.
Eli@coachdaddy recently posted…On the Road Again: This Time, at Mommy’s Rambles
katbiggie says
July 18, 2013 at 11:32 amThat means a lot to me. What you said is exactly why I write about it – to bring awareness, education, and to let my baby girl live on!
Mothering From Scratch says
July 18, 2013 at 10:53 am{Melinda} I am so sorry for your loss. I can’t imagine the pain of your journey and then losing a child. Tiny is beautiful. <3
Mothering From Scratch recently posted…What makes you count to 10?
katbiggie says
July 18, 2013 at 11:31 amThank you, I appreciate that!
Colleen @ MommieDaze says
November 12, 2013 at 7:05 pmWhat an amazing story! I’m so sorry for your loss.
Colleen @ MommieDaze recently posted…What My Dog Taught Me About Being There for People on the Bad Days
katbiggie says
November 13, 2013 at 11:26 amThank you so very much Colleen!
Nina says
November 27, 2013 at 4:44 pmThank you for introducing us to Kathryn 🙂 And you are a hero for advocating for your child. I wish more doctors would be just as resilient. I have infant twins too, but di/di, so we didn’t run into TTTS issues.
Nina recently posted…How to create holiday traditions your kids will love
Janine Huldie says
May 13, 2015 at 2:25 pmI know I did read your original story int he past, but thank you again for re-sharing and reminding us all here exactly what transpired during your pregnancy and delivery of both Tiny and Kathryn. Seriously, you are amazing to me always, Alexa and can never say that enough. Hugs, my friend.
Janine Huldie recently posted…Crazy, But All Girls Worry About Their Appearance