March 17, 2013

We arrived at UCSF Fetal Treatment Center on March 6, 2014 at 9:00 am.  Today was such an important day for us.  After receiving the life-threatening diagnosis from our ultrasound, we didn’t really have a lot of answers—mostly questions.  We knew the LHR, lung-to-head ratio was the most important factor in determining her current condition.  Ideally, we didn’t want to be a candidate, but we wanted a second opinion. Balloon Tracheal Occlusion is only offered to those patients whose fetus have the most severe form of congenital diaphragmatic hernia.  Earlier that week they provided us with an itinerary to determine eligibility for their research program: level 2 ultrasound to determine liver position and LHR, ECHO ultrasound of the heart to rule out any abnormalities, and a consult with a perinatologist, surgeon, and nurse.

In order to even be considered we had to be seen for a formal evaluation between 24 and 26 weeks and if eligible, the operation would be performed between 26 and 28 weeks.  It all happened so fast.  After arriving, our first consult was with the heart specialist for an echocardiogram.  After two hours of scans, scans, and more scans, the room was at a still silence.  The anticipation was so hard for me.  Interestingly, there was also a cardiologist in the room and a medical student.

After another 30 minutes, the doctor came in to deliver his findings.

‘The heart looks great.  All four chambers are functioning well, blood vessels and flow look good, and although the heart is pushed all the way to the right, it’s not smooshed or compromised.’

After hearing the news, we were so hopeful that she wasn’t a candidate and her chances of survival were higher than anticipated. The scariest part about all of this is not knowing how much time we’ll have with our sweet baby girl.

Next, we went to our ultrasound appointment to determine the LHR. This was really difficult for me; I lied there just watching her little stomach pressing against her beating heart.  She looked so peaceful inside my belly, so beautiful.  After two more hours of silence and scans, I broke down.  No voices, no answers, just the numbing sound of the ultrasound machine.  I thought we’d get some answers at that moment, but again, we had to wait.  After all the doctors gathered their data, we met for our consolation.

The perinatologist began reviewing our case out loud to make sure everyone was on the same page.  She pulled up our ultrasound scans and went through each image one-by-one.  She even drew diagrams to ensure we understood everything leading up to the LHR reading.  For a moment we thought maybe, just maybe, she wasn’t so serve after all, until she delivered her findings.

‘Baby has a LHR below 1.0 and she’s liver-up; she has extremely severe left CDH with a 30% chance of survival.’

Sadly, she is the ‘prefect’ candidate for the surgery.  She went from at 50/50 chance of survival to a 30% chance.  How could this be happening? The fetal surgeon joined us to review the findings and discuss our options.  I’ll never forget what he said next.

‘The fetal surgery could help her, but it could put you into pre-term labor and take her life; there is no way to know. With such a low LHR, mortality is high.’

Now, we’re faced with an unmentionable decision?! If we do nothing, she could survive, but there’s no way to know until she’s born.  If we do the surgery it could giver her lungs a chance to grow and increase her chances of survival, but it could take her life. The surgery has helped CDH babies in the past with even less of a chance, so for us, there was no other option.  We have to give her every opportunity to try to improve her condition and proceed with the surgery.

Why do fetal surgery?

While in the uterus, a fetus does not need its lungs to breathe because the placenta performs this function. However, if the lungs are too small (pulmonary hypoplasia) after the baby is born, the baby will not be able to give itself enough oxygen to survive.  The procedure can help by pushing the heart over and giving the lungs a chance to develop. 

The doctors at UCSF are incredible.  I have never been in the presence of such caring, compassionate doctors.  Their determination and grace had such a powerful effect on us – truly exceptional people.  They were so honest, so real, and spoke in simple terms.  After hours of questions and answers, we left feeling sad, but confident that we are in the best possible care.

‘UCSF has received an investigational device exemption to use a device new to North America for tracheal occlusion in severe CDH. We have the only significant experience with tracheal occlusion in the United States.’

These are the surgeons that will be performing Savannah’s surgery.  I have never seen doctors with such passion and devotion to science and improving life.  They are true heroes.

No matter how long Savannah is with us, she has touched our lives in so many beautiful ways.  She is loved and giving us all so much joy and appreciation for life.  We are truly humbled and cannot thank you enough for joining us through our incredible journey.  To stay connected with our full story, visit Savannah Hope’s Journey.  Thank you for all your love and support. ♥

Please visit Prayers For Savannah Hope Facebook Page to celebrate her through encouraging words, inspirational photos, and prayer.  

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Tracheal Occlusion Surgery: Inserting The Balloon