The Day It All Changed: Something is Wrong

If you missed The Overview -- start there.

I wrote this post the night we got our initial diagnosis from the perinatologist - February 11th.  It was 3am, I didn't sleep at all that night, and I was in total despair.  It was a very, very dark night. 

How can I possibly go on?

On February 3rd, I went in for my monthly ob appointment and sonogram.  The sonogram was to check my placenta, which the doctor had been monitoring for the last two months because of its low-lying position.  She felt confident it would move up and away from my cervix accordingly, but just needed confirmation.

I arrived for the appointment feeling my usual "pre-medical appointment" jitters, but wasn't too anxious.  I was eager to see if the baby was still breech, which would impact my plans for attempting a VBAC delivery.  My blood pressure was the lowest it's been yet this entire pregnancy - 100/60 - and a sonogram tech I'd never had before called me in quickly for my appointment.

She started the sonogram and began taking various measurements.  Baby was still breech but growing properly and moving around quite a bit.  She asked me if we knew what we were having, and I said no, so she stayed pretty clear of that area.  She measured the heart rate and then proceeded to spend quite a bit of time (at least 10 minutes) on the heart area.  She wasn't really taking any measurements, just looking around a lot.  I started to get nervous, but knew she couldn't tell me anything, so I didn't ask any questions.  I just held my mother/child necklace in my hand and stared at the ceiling, willing myself not to panic.  Finally, she asked if it was alright if she brought in another sono tech to take a quick look.  So much for not panicking!

A second tech came in - the woman who had done my 20 week ultrasound and was very friendly - and began to look around.  She was much more talkative than the first one and assured me that the baby was just in a bad position for them to get a good visual on the heart. She had me turn over on each side and she poked and prodded at my belly trying to get the baby to move.   All the while she's chatting me up about how good the baby looks, and I'm mostly staring at the ceiling feeling pretty numb.  She doesn't say much either about the potential problem, but finally gives up and the first tech finishes things up.  My doctor was down in the OR doing a STAT c-section so I had to see the nurse practitioner.  As soon as she walked in the room, I said, "So, what was up with the sonogram?"  She told me that they just couldn't get a good visualization of the heart, and that there were some notes that the same thing had happened last month (news to me), so she was referring me to a perinatologist in Kansas City for a Level II sonogram to check things out more thoroughly.

I left the hospital and immediately called Steve.  He, of course, had questions, and I didn't have any answers.  I just wanted to get the hell out of there as fast as possible so I hadn't asked any!  He suggested that I call and ask that my doctor call me back to ask her a bit more about the reason for the referral.  Did they actually see something wrong or was it really that they just couldn't see it well?  So I did that, but then a few minutes later decided that since I had an hour before I needed to pick up Jenna and the hospital is 5 minutes from my house, I would just go back up there in person to try to see her.  I was able to catch her after surgery and she was very reassuring that all would be fine.  I felt pretty good about it after talking to her, and Steve was confident nothing was wrong.  After all, I'd had 2 previous ultrasounds in the last two months....surely there would have been some indication the baby wasn't developing properly if it had a major heart defect? 

The week passed fairly quickly and before I knew it, today had arrived.  We had an appointment with the perinatologist at 2pm.  Their office was located in the same hospital where Jenna was born.  I had done pretty well with my anxiety around this appointment for most of the week, but the last day or so before the appointment, my usual "pre-medical appointment" dread had started to set in.  My brain always seems to go immediately to all the worst case scenarios and I can be easily convinced of all of them.  I fight against this pretty hard, but have yet to find an effective coping strategy.

The perinatologist was very nice.  Steve asked him about the reason for the referral and he confirmed that it was just to get a good visual on the heart.  "If I can see it, than there's no problems!" he said.  He started the sonogram and went immediately to the heart. He told us he could definitely see 4 chambers, so he'd come back to it.  I relaxed a little bit, as it seemed like he wasn't too concerned.  He took some measurements of the head and various bones, all which were normal.  He started to close in on the legs a little bit, and before he could ask if we knew what were were having and move the wand away, I am pretty certain I saw girl parts.  Can't be sure, of course, but I think we've decided to get confirmation at our next appointment. 

After 5 minutes of various measurements, the doctor went back to the heart.  He starts to lean in a little bit, staring intently at the screen.  Fortunately, he wasn't nearly as quiet as the sono techs were at my regular obgyn, and immediately started talking to us about what he saw.  It appeared that the left atrium and ventricles were working perfectly and there was a clear view of a nice big aorta with normal blood flow in and out.  However, the right ventricle was "cloudy".  It was present, which was good, but it appeared that the blood wasn't flowing in and out as it should.  He measured the blood flow and it was significantly decreased in comparison to the left side.  He also reported that he couldn't see a pulmonary artery - which could mean that it had been compromised due to the lack of blood flow.  He brought in one of the other doctors for confirmation.  Then, he said, "So what I'm telling you is that this baby has a significant heart defect that will require surgery upon the birth of your baby."  His initial diagnosis is Hypoplastic Right Heart Syndrome, but he is sending us to the pediatric cardiologists at the childrens hospital for confirmation.  He rested his hand on my belly and said gently that I did nothing to cause this, and that the baby had no idea that anything was wrong.  In utero, babies don't breathe on their own, so they don't need any blood pumped to the lungs.  However, shortly after birth the baby would not be getting blood flow to the lungs and would need surgeries to correct this defect in order to survive.  He told us that the cardiologists at Childrens would talk to us in more detail about the surgery options, prognosis, etc., and also said that it was much better to have this condition on the right side than on the left.    Also, much more uncommon.  About 4 in 10,000 births.  That's less than 1%.  That's right -- I continue to be a statistical anomaly. 

After we left, Steve and I kind of stood around aimlessly in the parking lot for a few minutes.  I felt myself getting angry.   I don't know why I never cry in situations like this -- and by 'this' I mean getting life-changingly bad news -- but I don't.  I get mad first, and sometimes the tears come later, but not often.  One thing I felt clearly.  Today marks the end of my miraculously uneventful pregnancy.  The pregnancy that had gone smoothly since before those little embryos were even implanted.  The pregnancy that my wide circle of friends and family rejoiced in and celebrated with me.  The much-anticipated and fought for pregnancy that will bring us a second child.  A child with a complex congenital heart condition.  A child that will change our lives forever. 


Next Up:  The Waiting, The Cardiology Appointment, and The Specifics