One of the pitfalls of social media is that often only the good stuff is shown. I try to be real in my blog, but another factor in posting things online is privacy. So sometimes things happen, and we can’t write about them. At least at the time. That happened to me. Now I have permission to share the story.
I wrote a post about my son’s wedding, and it was truly a joyous occasion. But what I didn’t write about was an event that occurred earlier in the week. That was actually one of the most difficult weeks I’ve ever lived through in my entire life.
All started great. Hudi, his best man, Chris and I met CJ and Lauren for bagels. It was incredibly fun, and a great kick-off to the week of preparation for the wedding. CJ and Lauren arrived bearing pics from the sonogram they just had. It’s a grandbaby girl 🙂
After breakfast, I wanted to drop some things off at Bri’s apartment and also at Lauren’s (they live very close to each other). That’s when our worlds changed pretty dramatically.
There were a lot of emotions, but I want to write about this more pragmatically. Lauren was on the phone with the doctor who was saying they found some concerns in the sonogram results. They thought the child had the worst case of spina bifida, but there would be another sonogram to confirm.
Since things looked pretty bad, and there was talk of intra-utero surgery if it was as bad as expected, they set up an emergency appointment three days later.
During that time, we were told to not look at the Internet too much. But of course we did, and we quickly realized the impact this would have on our lives. The siblings were right there for the the couple in a way that was sooo beautiful.
Thursday came, and we drove to Provo for the sonogram with better equipment. The news was excellent (perspective). There was no spina bifida.
Instead, it was a tumor. A sacrococcygeal teratoma to be exact. It’s very rare and not genetic. 1 out of 45,000 have this happen. If we were were given that news at the first sonogram, I think it would have been horrifying. But with perspective, we felt thankful.
Our grandgirl’s tumor is growing off her tailbone. It has to be watched closely. If it grows fast, it can increase blood flow to the tumor, which is often fatal for the fetal heart.
The tumor is growing fast, but so far there isn’t much blood flow. And it’s looking like the entire tumor can be removed after birth.
One concern was this: If it’s so rare, how do you find someone who knows how to deal with it? One of the best places to go for care for this is in the Children’s Hospital of Philadelphia (CHOPS). Pretty far from Utah.
We found an interview online. It was a doctor talking about this type of tumor in babies. After researching a bit more we found out that the doctor trained in CHOPS then started a medical facility in Utah specifically for babies with rare, high risk issues. Felt like a miracle.
Now it’s a couple of months later, and the parents have consulted with the surgical team in Utah. We are actually feeling quite encouraged. There are many cases that are much worse than what our grandgirl has, and the specialists can help those kids, too.
At this point, it looks like there will be a c-section surgery to bring her into the world at about 36 or 37 weeks of gestation. There will be sonograms every other week prior to that to monitor tumor growth and fetal heart health. After the little one is born, she will stabilize for a couple of days then have her surgery. If all goes well, she will go home after 4-6 weeks in the Newborn Intensive Care Unit (NICU).
From there out, she will most likely be able to live a full and healthy life. Pretty amazing what science and prayer can do.
Part of me doesn’t want to write about this at all, but I’m hoping it will bring peace — or at least a sense of not going through something alone — for people in a similar situation in the future.