Our Babies Could Use Your Support
 

The great news is that I am a dad of two beautiful little girls.

The terrible news is that those girls are in extreme medical duress.
Yesterday, my wife gave birth, via emergency c-section, at 29 weeks, two days. At sixteen weeks, what looked like a normal, but rare, identical twin pregnancy became far more complicated. Our babies were diagnosed with a disorder that happens about 15% of the time with identical twin pregnancies called Twin-to-Twin Transfusion Syndrome. A detailed medical description isn’t necessary, but a brief one may help to understand.

The placenta provides blood flow and nutrition to a developing fetus. Most of the time, identical twins draw from the placenta with little issue, but in Twin-to-Twin, there is an imbalance. One twin, called the recipient, pulls too much blood from the placenta, and also the other baby. This makes the recipient polycythemic, basically the exact opposite of anemic. With too much blood, especially red blood cells, the blood becomes sludgy, and all the extra fluid which the baby receives from the extra blood puts a great deal of strain on their system, and can lead to congestive heart failure and other problems.

The other twin, the donor, experiences problems due to a lack of blood volume.

As a result of this circulatory imbalance, there is a massive discrepancy in amniotic fluid. The recipient swims in a pool of it, while the donor is, in essence, shrink-wrapped by the lack of fluid as the amniotic sac pulls in around it.

The condition is gravely serious, and without treatment, will usually carry a mortality risk of 100%.

After finding out that what we thought was going to be a normal pregnancy was anything but at 16 weeks, we had a procedure done in St. Louis called fetoscopic laser ablation. Developed a little over a decade ago, surgeons make a small incision in the mother’s abdomen, and with a small endoscope and laser, cauterize shared vessels between the two twins. This helps to establish a normal blood flow between the two babies.
We had this procedure done on May 6.

Initially, everything looked great, as the fluid levels between the two babies balanced out, and blood flow patterns appeared within normal range. About three weeks after the procedure, our specialists noticed that the condition had actually reversed itself. About 10% of the time, the condition will spontaneously reverse itself.

It was apparent to doctors at this appointment that this had happened near the end of May. Fluid levels were imbalanced, but still at the very end of normal. As such, the doctors felt it was the best interests in prolonging the pregnancy, which was not yet at viability, to avoid another event that would require making a hole in the amniotic sac. Thus, we embarked on a pattern of extreme vigilance. At multiple appointments per week, doctors performed an ultrasound wherein they would measure amniotic fluid levels, blood flow across the umbilical cords, and within the cerebral arteries in the brain.

After this second scare, it appeared that things began to normalize. Most of our subsequent appointments looked improved, and everything appeared to be on a healthy, normal trajectory.

Until Wednesday night.

Late Wednesday, my wife began to feel a series of small contractions. While normal in the third trimester, she had enough in a short period of time that it was necessary to call the doctor. He had us come into the hospital for closer monitoring, and after doing so, noticed that one of our babies was in distress. We had three ultrasounds last night and early into Wednesday morning, and after doing so, the doctors felt that it was in the best interests of the babies to deliver them at an extremely early, 29 weeks, but still viable age.

At 5:09 and 5:10 pm yesterday, we welcomed our little girls into the world.

Continued in post #2

Because of their age, things are critical, but additional factors and deterioration in their condition have caused a number of grave concerns.
Due to what a sudden worsening of their condition, our original recipient baby, which in late May became the donor, had a seizure shortly after birth. Doctors have had an extremely hard time maintaining her blood pressure as well as the oxygenation of her blood. She has received multiple blood transfusions in an effort to both boost her pressure, oxygenation, and red blood cell count. However, due to problems associated with a hypoxic environment, she has suffered a few seizures, and to compound that further, she has been fighting the ventilator.

Her older sister is also critical, but her problems are not at the severity of those I’ve mentioned above. Since she recently became the donor, her body has far too many red blood cells, and consequently she currently has the pallor of a red grape, while her sister remains pale due to an inverse condition.

It’s hard to exaggerate the seriousness of their conditions. Don’t think of this as a pity party, as it’s not about me, it’s about our girls.

I just wanted to mention this to the entire community so that you could send out any good thoughts, vibes, or prayers that you may have, as they are in need of every one of them.

I’ll continue to provide periodic updates as the situation progresses.

Good thoughts headed your way! Good luck!

Jesus Christ dude...I'm so sorry to hear that and you have my full 100% support and prayers.

If you need anything from me, shoot me a PM or let me know.

You have my prayers. I really hope everything turns out for the best.

Damn, sorry to hear that. Thoughts and prayers your way.

Sorry to hear about that Hamas. You and your family are in my thoughts and prayers.

Terrible. I sincerely hope everything works out for the best.

wow, terribly sorry to hear that hamas....my thoughts are with your family

I hadn't heard of this condition before. Damn, man, hope all works out for your daughters. Thoughts and prayers to you.

I hope your situation turns for the better. You're in our thoughts. You and your whole family.

I was wondering where you had been seems this was prime Hammas posting time.

That is an incredibly unique situation. All the best to your family man. There are a lot of people behind you in this community.

It sounds like they must have a fighting spirit to get this far, so that's a good thing.

We just got back from the NICU. Our less critical baby has had a fairly calm night. They are currently shining a blue light on her to help get rid of jaundice, which can be a byproduct of breaking down all the extra red blood cells she has. Our other girl has had a rough night, but she seems to have stabilized a bit over the last few hours.

When she was first born, she had a blood sugar of 1. My wife, who is a PICU nurse, told me she had never heard of a sugar this low. Most likely, that is what was causing her to seize. It's still low, but much, much better than that. For reference, I believe normal is right around 80-110.

To update you all further on the underlying condition, here are just a few more rare facts:

Identical twins happen about 3:1000 births
Twin-Twin happens in about 10-15% of identical pregnancies
After laser ablation, the procedure reverses itself (where the old donor becomes the recipient and vice-versa) about 10% of the time

The team in St. Louis who did our procedure told us that these babies were the youngest, in terms of gestational age, they'd ever worked on.

So, if you all were wondering why I've been fleeting the last few months, that's your very long and complicated answer.

Thanks again for all your kind thoughts and messages.

Wow, I'm so sorry to hear your story. My thought and prayers are with you and your family.