Helpers in a Foreign Land

#avcanaldefect #cardiology #fetalechocardiogram #ripcurrent #tidalwave #foreignland

On Thursday, May 13, we were still excited and thankful to hear that our Ruth did not have any major known syndromes, and we were looking forward to what the cardiologist would say. As I said in my last blog post, I felt like I had my feet on solid ground for the first time in a week. We were hoping that the pediatric cardiologist at Savannah Children's Heart would give us more insight regarding Ruth's specific heart problem, and maybe even give us a procedural timeline for birth to surgery. We would start with a fetal echocardiogram, which is special imaging to look at the blood flow & functionality of the heart.

Pictured above is a google drawing of a typical AV Canal defect. You can see there are equal sized holes in the atria and the ventricles, so this is what we were expecting to confirm or measure today.

Quick side story: We left early enough to grab lunch on our way over to Savannah. We'd learned at our appointments the previous Monday that most of Savannah is still shut down/takeout only due to the pandemic, so we looked for an open place to eat outside of the city. I found a little place called Charlie Grainger's in Richmond Hill, and y'all. IT WAS SO GOOD. Gourmet hot dogs, barbecue, brisket, and homemade desserts, like Oreo Delight. Basically, it's all the foods that are REALLY frowned upon for adults to eat on the way to see a cardiologist. But hey, I'm technically not the patient. Highly recommend.

We got to our referred cardiology office, which is actually a separate building on the same campus as our hospital. Its beautiful façade made it look and feel newer than my OB office, and I was pretty darn excited about the potential of walking into a state-of-the-art pediatric cardiology facility.

...Yeah...that's not what happened.

Now, I'm going to have to choose my words very carefully for this next section, because I try hard to stick to the "if you can't say anything nice, don't say anything at all" rule we learned as kids. Also, I don't want to be taken to court for anything bogus, like slander, when I just really want to share my experience. This is also why I have only used the actual name of the practice once - so that a quick Google search won't pull up this page for repeated use of its name.

So here is the exhaustive list of nice things that I can say about this practice:

• The outside of the building is beautiful.

• The women who have done my fetal echocardiograms (I've now been twice) were warm, kind, and talkative as they took images and videos of my child's heart function.

That is all.

The techs who perform the echo are not at much liberty to discuss what they see without the doctor reading the scans first, and I understand that. So, we got through our first fetal echo and still really did not know much. Kane & I then moved out of imaging and into a patient room to wait until the doctor came to meet us.

[There are three doctors within this practice, but we have only ever met with one doctor. I will not disclose the doctor's name, but please reach out if you are ever referred to this cardiology group and I will be happy to give you my full opinion.]

The doctor came in and began talking to us about Ruth's condition. Please keep in mind that Ruth has a laundry list of other differences, but the most pressing is her heart. This doctor confirmed Dr. Baker's initial diagnosis of an AV canal defect, and that she would need surgery to fix it. His best guess though, was that it would not be immediately after birth (as Dr. Baker had said on Monday). That's great news! He then went on to explain, however, that Ruth's heart is different from a traditional AV canal featured in the opening picture. Whereas a "normal" AV canal has equally sized holes in the atria and ventricles, Ruth's atrial septum is missing entirely. She is missing some, but not an equally sized portion, of her ventricular septum. Overall, this isn't great news; the good news, though, is that a common atrium (meaning one atrium instead of two atria, like we should have) is easier to close than a common ventricle. That is really, really great news!

After this, the meeting kind of went downhill. He would ask about syndromes and defects (which, again, I prefer the term differences), and we would remind him that Ruth did not have any chromosomal syndromes; all of her 21 syndromes were in perfect pairs and present. Here's an example of how one conversation went:

Doctor: "Did Dr. Baker mention anything more about her organs being misplaced?"

Me: "He mentioned it in passing, but the only thing that's 'misplaced' is her stomach."

Doctor: "So, nothing about her spleen or liver?"

Me: "No...why, did you see something?"

Doctor: "Oh, no, I only look at the heart. I don't know."

Then why would you even bring it up?!

After that, he sketched the heart and tried to explain to us what was happening in Ruth's chest. For everything he told us could be happening, he would immediately talk back. He would say, "Well, it could be THIS, but then that and that and that would happen, so it might not be this." He did this three different times. I was honestly dizzy after this conversation. He said a lot of things, but ultimately, he said nothing.

I tried to ask him my questions that I had prepared in my binder, and most of them were not given a dry, cut answer - even my yes/no questions. For example, knowing that we will be coming home with our child who has a heart condition that is so serious that surgery is required, I asked if he recommended that we get life flight insurance in case she goes into cardiac arrest one night. He then responded, "I mean, you can, it's up to you. You don't have to, but you can." Okay. I'm pretty much done at this point.

By the way, we did choose to go ahead and sign up for this service - it's $85 a year for your entire family to be covered. If you want to sign up, contact me so that I can refer you. If you sign up with a referral, you get one additional month of service for free (so, 13 months for $85).

We finished our meeting. I paid our co-pay, and Kane was looking like he was about to explode. I told him not to say anything until we got out of the building. Let's just say that we both agreed we would not be going back. There was no way that I could handle this for the next three and a half months of pregnancy plus 18 years of my life. (Spoiler alert: I did have to go back, but more on that in a later post.)

We went to my OB's office for the meeting with our geneticist, and was very candid about what we had just experienced with the cardiologist. She told us that, if we wanted to, we could actually go ahead and get a second opinion with the Sibley Heart Center cardiology group. Sibley Heart Center is based in Atlanta and is part of Children's Healthcare of Atlanta, and is the group who would (most likely) be doing Ruth's surgery anyway; Savannah does not offer pediatric cardiothoracic surgery. We agreed to get the ball rolling on this process. We wanted a second opinion, and we really wanted a pediatric cardiologist with at least the slightest bit of empathy.

I think this was my biggest problem with this cardiologist. I felt like he was downplaying my kid's case. Every other doctor and geneticist and sonographer with whom we have met have shown wide-eyed concern and care for us, and he seemed to feel okay with dragging his feet (his actual words, not mine) regarding her surgery. Is this because he only deals with the heart, as he had mentioned before? Is he only seeing one piece of a much larger and complicated puzzle? What is the "larger picture" going on with my kid that no one can seem to tell me?

We had more blood drawn for testing and research, and left Savannah that day feeling pretty unsure. The day before felt like I had found solid ground and was walking upright; today felt like the realization that this solid ground was unfamiliar at best. I was walking on foreign land. There was a new language, new customs, new protocols...and I didn't know what any of it meant. In this situation, though, you can't turn around. You keep on going, trusting that Christ has gone before you and will provide helpers to you. I might be the first to go through this specific problem, but I'm not the first mom of a heart warrior in our small town. I'm not the first mom who's had to worry about the immediate and long term health of her child in our small town. I'm not the first mom who's had to have a child in the NICU in our small town, or even in my family. The women who have gone before me and have remained faithful to the One who put them in those situations are now helpers to me in this foreign land. They may never know why God chose to put them in their various situations, but I can assure you it is for His glory and to further His kingdom. In Philippians 1:12, Paul writes, "I want you to know, brothers, that what has happened to me has really served to advance the gospel." Of course, Paul is talking about his imprisonment, but we can take this and apply it to any devastating situation. God will allow you to go through a crisis so that you can help others grow in Christ during similar circumstances.

And that is where we left it. We had appointments set up for two weeks later, and were potentially waiting 10 BUSINESS days for part two of our amniocentesis results. It would be a rough 10 days, but one full of hearing from helpers, reflection, and still seeing the goodness of God.