Our TTTS Story

To follow our Twin-to-Twin Transfusion Syndrome story, please see the links below:

Finding out we were having a baby…I mean TWO babies: The Big News

Morning, noon, and night sickness: First and Second Trimesters

When I knew something was wrong, but no one else seemed to: Early September

Officially hearing the bad news: The Diagnosis

The most stressful night of my life: The Night Before Surgery

It’s amazing to think that surgeons can perform surgery in utero; years ago, both of our babies would likely have died or been born very prematurely: Surgery and Back Home

Waiting and waiting for the other shoe to drop: More Bad News

Finally riding out the end of pregnancy: Smoother Sailing

The day we welcomed our two beautiful girls: Go Babies, It’s Your Birthday

Trying to cope with one sick baby in the NICU and one healthy baby: Twin Mom, First Official Days

Bringing babies home and trying to figure out what Baby B will need: Full House, Full Hearts

Navigating our new life: Adapting

Catching up to the present: Catch Up

Share and share alike: Let’s Talk About It

3 thoughts on “Our TTTS Story

  1. This is a wonderful Double Survival outcome under the mastership of Dr Ruben Quintero. IDK that we have ever “met” online. I & my people try to communicate with everybody that has had TTTS recently diagnosed, it seems at this point that we missed each other at that time however. Someone of your Perspicacity would see a lot of the work remaining to do, in making moms of identical twins and especially their trusted physicians aware of the existence & Magnitude of the the TTTS Gestational Threat to MoDi , it is far & away the biggest there is in this very rare & special type of pregnancy. It is a distinct pleasure to learn of your case & it’s truly awesome Outcome. In my groups there are families who are battling neurological issues in their babies, many of these the result of Prematurity. I haven’t closely studied the material regarding ‘Microcephaly’ in your case, I can however relate that this is very rare indeed in the TTTS Donor & as a MoDi Discordancy in general. Also it needs to be mentioned that while the Neonatologists are Truly Expert in keeping Micropreemies alive & then Thriving, their skillsets in Pediatric Neurology & Neurosurgery are sufficiently Divergent from their training that we advocate the Relevant Specialist be added to mom’s medical team at the first hint of any issues in these areas, & that their Expert Opinion be deferred to. This may not seem like much, but I can also relate that there have been DOZENS of Losses we know of over the past few years when a Neonatologist has Pronounced “Terminal Hydrocephalus”, to use the biggest example, as a reason to withdraw Resp Support from a baby that was highly likely to be Perfectly Fine if this very treatable condition was only addressed. Regarding your mentioned issue with Microcephaly? Apply to http://facebook.com/groups/MoDiTwins to enter a community of over 4500 MoDi Twins families from across the entire spectrum of possibilities for MoDi, & we’ll conduct our first-ever “Microcephaly Roll Call” to try & get a handle on this unusual condition from the MoDi/TTTS Perspective.

    Feel free to communicate any time,
    Michael Ray Overby,
    Lay Counselor for
    MoDi Twins & Pregnancy on Facebook.

    Like

    1. Thanks, Michael. I’m in the MoDi groups and started the Identical Twins but Medically Different Facebook group. I’m glad that you took the time to read our story, and I look forward to helping other TTTS families as well. As far as microcephaly being a rare TTTS complication, I’ve actually connected with a mom whose story is very similar to mine who has one little lady with microcephaly and one without. She had the laser surgery in Cincinnati at around 18 weeks. That’s the beauty of Facebook and the support groups…we found each other in this sea of TTTS moms!

      Like

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