Fetal Surgery - May 3, 2017


Our journey to fetal surgery

After the diagnosis we returned to our lives for about 6 weeks. When we shared the news of our baby's defect, the insurmountable love and support was truly overwhelming.  An outpouring of phone calls, text messages, cards, care packages - people offering to help in ways we'd never even think or consider.  To those of you who reached out during this time, "Thank you" doesn't begin to explain how your one small gesture, message, encouragement helped us forge ahead with even more confidence that we could take this on. Our parents and siblings and best friends educated themselves on Spina Bifida, learning everything they could about what we might endure. Their constant check-ins will never be forgotten.  Everyone has bad things happen, everyone is busy...how did we get so lucky to be surrounded by such wonderful, kind people?


We made arrangements to visit University of California, San Francisco for a three-day consultation at the end of April. Our goal was to understand if we were candidates for fetal surgery. Meaning, was our baby's case bad enough that surgeons felt they could help her?  We made plans for Eric's mom to stay and care of our girls. The thought of leaving them for even a week brought tears to my eyes. I discussed leave options with my boss, preparing for a short-term disability in case fetal surgery did happen. Eric created a plan for his business, should he have to be absent for a month or more.  It was stressful - we didn't want to leave our kids, lives, jobs - everything.  

On April 24th, our 8th wedding anniversary, we boarded a plane and headed to San Francisco.  

Day 1 - 4/25/17: Tests begin. The day was filled with a series of ultrasounds, echo-cardiogram, and meetings with nurses, anesthesiologists, and Doctors to prepare us for what could come.  At the end of Day 1 we were exhausted and confused.  They couldn't say for sure if we were candidates for the fetal surgery yet.  We started to have hope that baby's case of Spina Bifida was a bit more mild than we thought. The legion on her spine was in the lumbar 3 area and her brain was being pulled down (aka Chiari) but not to the extent where they were 100% confident the benefits would outweigh the risks. To confirm candidacy,  I needed an MRI to take a deeper look at baby's brain which was scheduled for the next day. I began thinking we may  not need to go through all of this. We could go back to lives as normal. I could finish out this pregnancy, go home to my kids, go back to work and my life that I loved for a couple more months before things got really crazy.  Yes, baby would have to have surgery after birth, but maybe she didn't need it now. 

Day 2 - 4/26/17: No coffee for me! Headed to my MRI at the hospital. No food for me either - insert cranky, pregnant girl - poor Eric.  We were told the MRI would take about 2 hours. They had me lay on a small, narrow table and rolled me into a very small cone-like machine. I had an eye mask on so I didn't have the option of actually seeing the inside of the coffin I was in.  My arms were strapped down and I could feel the sides of the cone pushing tightly against my hands.  I thought of my grandma, said prayers to her in heaven that we'd get the news we were supposed to get. The machine spoke to me in a robotic voice, "Hold your breath. Release." Over and over again. I wanted to ask how much longer but if they told me another hour I may have had a panic attack. Finally, after two and a half hours they rolled me out.

After the MRI, we met with our lead fetal Nurse, Rachel. She ran through our afternoon meetings and all of a sudden said "So, you're candidates for surgery!" I immediately got tears in my eyes.  Like, what?? Just like that? I didn't know if I was upset or relieved or what. She drew us a diagram on the white board to depict what baby's brain looked like in the MRI. We were on the cusp of needing surgery, but it would indeed help baby.

The afternoon went on in a blur. I felt defeated, still unsure why I was emotional. We went to dinner and Eric was so positive, saying upbeat things and having a great attitude about the future. The restaurant was tight and crowded and in the middle of dinner the tears started flowing. I lost it. Poor Eric. He looked at me and said, "Uh-oh, we're doing this now." People were looking at me. I couldn't comprehend leaving our kids, getting cut open, leaving my life, the recovery after surgery. I felt so selfish and was so overwhelmed. In a matter of a week our lives would change. Eric always knows the right things to say. He calmed me down and put a positive perspective on all of it.

Day 3 - 4/27/17: Our final day of consults! Our first meeting was with a fetal surgeon named Dr. Auguste who would operate on baby. He took the time to show us detailed images of the baby's brain from the MRI. It was evident he cared very much about our baby. He said those exact, sincere words to us - he had kids too.  

I had questions. Would she still need a shunt (or neural tube operation) after surgery, after birth? Would fluid still possibly flow into her brain? Where he couldn't make guarantees he explained it like this, "If I have even a shred of confidence that I can take away the fear of a shunt and eliminate months of lost sleep for you and your husband then I'd say yes, this can reduce her chances of a neural tube operation after birth by 60%." I then said, "So you're telling me you think you can help my baby." He said, "Yes, I think I can help your baby." That was all Eric and I needed to hear. This was our future.  

We had one last appointment with a nurse who explained what our lives would be like with a Spina Bifida child. She mentioned Spina Bifida kids are slow learners, that our baby in particular would likely have to wear braces on her legs to walk and there was a 90% chance she'd have a catheter her entire life for restroom assistance. These were not things I wanted to hear. I still don't really buy what she was saying. I know our baby will surprise us and  my heart knows she has the will to defy the odds.

I argued with her just a bit...saying, "Why would she have to wear braces all her life? Couldn't she just start walking without them one day..." The nurse pushed back saying that since both of her feet are clubbed she wouldn't have that stability to stand flat on her own.  I started to think about fashion - shoes...confidence is important for a girl/woman.  I asked if she'd be able to wear high heels....I know I feel most confident when I stand a bit taller.  The woman gave me a look of shock at my question (my husband was not phased)...she narrowed her eyes and said - no - no high heels. (We'll see about that. Kristi Yamaguchi, an Olympic Gold Medalist skater has clubbed feet and she can wear ice skates.) 

Next we discussed her catheter. Ugh - just try to envision the idea of your child having to give herself a catheter her entire life. It's incomprehensible. We discussed use of a catheter and how she could avoid having accidents and endure embarrassment at school.  Eric assured me that by the time our child gets here, who knows what kind of medical miracles could be available to help her. 

Last, I wanted to know if she would be able to have children and if so, would her babies be prone to this defect. Yes, she could indeed have children and no, there was no correlation that she'd have a Spina Bifida baby. I could never wish this on anyone especially my own child.  

Consultation complete. 

We spent the next 4 days soaking in time with our girls and making final arrangements with our jobs to take leave. We were told we'd likely spend the entire month of May in San Francisco for surgery plus recovery. We boarded a plane on Tuesday, May 2nd to be admitted to UCSF hospital that evening. Surgery would take place the morning of Wednesday, May 3. 

SURGERY DAY: 5/3/17: I woke up in the hospital bed with  a nurse taking my vitals. I was the first surgery that day and it would take about 4-5 hours total for the procedure. Nurses and Doctors came in and out of my room to introduce themselves in prep for surgery. Finally, I saw a familiar face walk in my room. Eric's dad, Al. Eric didn't know he was coming, but he flew to SF just for the day to sit with Eric while I was in surgery. My heart was bursting. What a relief. 

The prep began. Nurses inserted a catheter, gave me pills to take prior to surgery, took my blood, inserted an IV, and did some other unpleasant things that I'd rather not share.  In my bed, I was taken into a massive metallic elevator that you only see in movies. In the OR prep room I signed several papers and the team kept asking me "Do you know what you're here for?" Each time I had to clearly state "Yes, I'm here to have open fetal surgery." They also asked over and over again, "Should your baby go into distress, do you want us to do everything we can to resuscitate her?" Each time I answered, "Yes." It was time to say goodbye to Eric. He was so strong, gave me a kiss and said, "Bye sweet pea."

Looking back, I can't believe I didn't have a panic attack at this exact moment.  I was calmer than I'd ever been before. The OR room was intimidating. It was large with dozens of metallic machines, equipment and 20+ people going about their business to prep for this surgery.  They took me off my bed and had me scoot onto the operating table.  Drs. Britton and Rollins, the two head anesthesiologists stayed next to me and made chit chat.  After about five minutes Dr. Rollins said to me "Okay Kate, I am going to put this mask on you.  Just breathe, and in about ten seconds you'll go to sleep." I was ready. And I think it took less than ten seconds for me to go under. 

I woke up in a moving bed. It was over. A lot of this is blurry. I asked for Eric several times. I was being rolled back into my hospital room. It was hard to breathe, I was so scratchy. Eric was at my side in minutes. He had relief in his eyes. I asked him how our baby was. The surgery went much faster than they'd expected and baby did great. With about ten people in my small room, everyone assured me that baby did fantastic. They were able to stitch up her spine with no complications. Relief.  My mouth was a cotton ball. I could've drank a river...I begged and begged for water. Eric was allowed to give me tiny ice chips.  After getting settled, Eric and I finally had a moment. I remember asking him if he talked to our families. He told me to sleep. And I did. We'd done it. Eric, baby and me - we'd gotten through this miraculous fetal surgery. Our baby was okay. Now for the recovery.