An Unexpected Journey

At our 16 week growth ultrasound and OB appointment, I saw a different doctor. Dr. Seyb was on vacation, so I met with Dr. Blea. This is not unusual and I was excited. It is important for me to be familiar with all four of the doctors in my office, just in case one of them in on call if I go into labor. 

We had a routine ultrasound with our favorite tech, Kara. Baby A, Heston, was still measuring significantly smaller than his brother Jackson.  We had been monitoring this growth discrepancy for a while. New today was the difference in fluid levels in their respective amniotic sacs. Jackson and William both weighed in at 7 oz and Heston at 3 oz. Jackson’s fluid was at 8 cm in the deepest pocket and Heston’s at 2cm in the deepest pocket. Heston’s Doppler showed lack of diastolic flow (the blood stops flowing when the heart is resting between beats).

All of these markers are consistent for risk of TTTS. Dr. Blea told me that he was very concerned for the twins and that we should head to Seattle for a meeting with the specialists there. Evergreen Hospital in Seattle is home to Dr. Walker and Dr. Paek. They are two of about ten or so surgeons who treat and assess TTTS in the US. He immediately called Seattle and our appointment was scheduled for two days later. 

I left that appointment devastated. The essential breakdown of the fear that Dr. Blea had was that we were going to either lose both of the twins or that they were at risk for severe neurological deficits and/or cerebral palsy. His concern was rooted in the fact that these symptoms were manifesting themselves so early in my pregnancy. There was a high chance we would lose 1, 2, or all 3 of the babies if we did nothing. 

We made emergency travel plans and tried to cope with the possible imminent loss of two of our precious babies. I cannot begin to describe the terror I felt and the unimaginable sadness at the idea of not getting to watch them grow.

Our family and friends were tremendously helpful during this time. A wonderful friend agreed to watch our fur kids (there was no room at doggie day care!) and our house. Family helped with expenses and travel arrangements, which proved difficult. Seattle was apparently hosting all the events in the world the week we needed to travel. There were almost no hotels available anywhere and rental cars were triple the going rate. 

My husband joked that there was no room at the inn. 

Our time in Seattle was a lot of waiting, driving, and worrying prior to our appointment. I cried a lot as I researched everything I could about TTTS. Mortality rates for untreated, severe TTTS are 80-100% for both babies. Loss of any of the fetuses puts the others at risk for pre-term labor as well. 

(On a side note 1: If you find yourself dealing with TTTS, or any severe medical issue related to your pregnancy or your child, you must learn as much as you can so that you can be your own advocate. Not all nurses, doctors, techs, etc. are created equal. They may misread your chart or, in the case of multiples, misidentify the babies. Everything that I have read and experienced as taught me that you must know as much as you can about your babies. Ask questions, but, most of all, be informed. 

(On a side note 2: I contacted the Twin to Twin Transfusion Syndrome Foundation in Los Angeles for information on TTTS. Mary is their coordinator. She called me back personally and is a wonderful and helpful resource for any parents dealing with TTTS. She gave me a wealth of information and is there for support as often as we need it.)

My biggest fear was actually the ultrasound. I was afraid of going to that and having to watch my three boys on the screen together for what I feared might be the last time. How long would they last? Would I be able to see if they were in trouble? 

My husband was sad because he had just adjusted to the idea of having three boys and now we might not have any.

We didn’t sleep much.

The morning of our appointment in Seattle started with finding the correct wing of the hospital and filling our more paperwork. 

The ultrasound was almost three hours long and then followed by a consult with Dr. Bettina Paek. I am exceedingly grateful to my husband and to the wonderful tech for helping make that three hours bearable. The tech chatted with us and kept us informed but distracted. I think she must have lots of practice soothing parents’ fears. 

This ultrasound measured everything humanly possible. It gave us a huge amount of information. William and Jackson measured in the 80% and 75% for growth respectively. That is very good. Heston measured in the 8% for growth. If you suffer in the math department, that is really, really bad. 

The fluid between the boys was measuring at 7.5cm and 4.5 cm. Heston’s Doppler showed three vessels in the cord, no heart valve issues, but still showed absence of diastolic flow. On the positive, Heston moved and rolled like a little champ. There was no obvious distress, which made the doctor very happy.

We were able to see the placenta that the twins share (which is anterior, by the way) and the small membrane that separates each twins' “section” or portion. We were able to see the cord insertion of each of the twins.

Jackson has a much larger section of what we can describe as a large placenta pie, if that analogy works for you. He has 7 pieces and Heston has 1.  Jackson’s cord inserts properly into the center of his placenta. Heston’s inserts to the very side. Both of these things mean that Heston has access to less blood and nutrients provided by the placenta than his brother does. This explains the growth difference between the two boys. 

I really, really like Dr. Paek. She was kind, but straightforward. I so appreciate this in a doctor. I do not need or desire things to be sugar coated.  I want the truth and the facts, but there is no need to be as callous as some doctors are.  She was great. So far, we have been very blessed in the medical professional department and have had very good experiences all around. 

Dr. Paek reviewed the information and told us that she did not think that we had TTTS at this time (however, mono-di twins can develop symptoms anytime), but rather that we had a condition called placental insufficiency and that Heston suffered from intrauterine growth restriction. 

While this was a huge relief in the TTTS department, it does not mean that our boys are out of the woods. I am on restricted activity and need about 175 grams of protein each day to help feed Heston and keep the fluid balanced between the boys. I still see my high-risk doctor in Boise each week and we require the specialist’s monitoring for Heston’s progress and are heading back to Seattle tomorrow.

We could use all the prayer and thoughts you have to offer for our little man.