“Your baby’s heart is so beautiful!” Dr. Puntel said enthusiastically, when I was around 20 weeks pregnant.
I didn’t disagree. I was just surprised at the excitement.
Through God’s grace, we discovered very early on that Butternut, our sweet baby in utero, was facing serious medical issues.
Dr. Puntel confirmed at our first echocardiogram that there was a big hole in Butternut’s heart.
It was a lot to take in. We had dealt with a misdiagnosis a few weeks prior when we learned our sweet baby had Trisomy 21 and not Trisomy 13. This meant he had a better chance at life, praise God. It also meant he would still face some health challenges. All of this before I was even far enough along to look very pregnant!
Our experiences were not exactly something most doctors shouted joyfully about… most were concerned for Butternut, and rightly so.
Our beloved cardiologist, Dr. Puntel, or Dr. Tel as my daughter calls him, was different.
Dr. Tel was one of the first to be excited for us about our baby. So excited that he genuinely saw only beauty even when he knew he was working with a congenital heart defect.
You see, Dr. Tel has a grandson with Trisomy 21, also called Down’s Syndrome. I’m sure nothing would have stopped him from loving Sammy from the get-go, but this helped.
Dr. Tel:
“Your baby’s heart is so beautiful.”
My thoughts:
You just told me his four chambers (please come back to me Anatomy class!) are all open and that can’t be good for his first few months of life. He’ll need an open-heart surgery to correct this? You need him to stay inside me for as long as possible to have a great chance at surgery being successful? Everyone else says he may have to come early. This is very complicated.
His words still come back to me sometimes. He went on to say more, something like this:
“He has a great looking heart.”
What?
How can someone be so optimistic?
This question coming from an eternally hopeful, annoying sunny side up me.
At that moment, I really wanted to be told that my son had a beautiful heart that was suddenly and miraculously healed and he no longer had a hole and good-bye.
I believe God did heal Sammy (Butternut) very tangibly, but in other ways.
Several other “abnormalities,” as they were called, stopped showing up on ultrasounds. The heart defect remained and we got very close with Dr. Tel.
Not only was he our cardiologist in utero, he followed us through once he was born. Dr. Tel visited Sammy in the NICU and saw us often to prepare for Sammy’s surgery, expected five to six months after birth.
If he found Sammy lovely while inside me, the fondness only grew more and was evident during every visit once he was born. We would smile gratefully at a doctor who took time to comment on how cute he was and how much he loved his hair and how well he was doing (while dear Sammy was still on oxygen).
Dr. Tel found a way to make every hard situation brighter and it wasn’t syrupy sweetness or unwanted optimism. He showed us a pure joy and could see what we couldn’t in some new and frightening situations.
Even though we always saw beauty and love and joy with Sammy, the first several months were filled with scares and crises and surgeries, which made us grateful to have someone who could see past it all, someone who believed it would get better. Someone who told us when we didn’t have words that Sammy’s heart was beautiful and that we would make it through, that he would make it through.
As I type these words, my eyes fill up with tears. I’ve started and restarted writing this post because I knew that the journey we have been on has turned out brighter now, Sammy is well at 13 months (!!) and he made it through not one but two open-heart surgeries. As his mom, I never doubted his bravery and God bringing us through. But as my husband talked about in his recent piece, crisis and especially chronic crisis, has the potential to break you.
It has the potential to sadden even those who are angels in the flesh, the ones who have given you hope all along.
Like every great story, there’s a plot twist, and I already gave it away when I told you Sammy needed a second heart surgery. Unexpectedly. If you know us personally you know that it was only by God’s grace that the exhaustion of back-to-back surgeries didn’t crush us.
It was a plot twist to find out in early December last year that we would have to face another surgery. Dr. Tel’s echo discovered the previous repair didn’t hold and Sammy’s mitral valve was leaking as much as a valve can leak (I was now so sorry I didn’t pay attention in Anatomy class!).
My dear husband Ian was already at the hospital in Phoenix. Sammy had suddenly declined and we weren’t sure why. He went by ambulance while I stayed back with Lu. We weren’t sure if this sudden hospital stay was anything serious (desensitized, anyone?) and we were hoping Sammy could come home in the next day or so. Still, I wanted to get up there as soon I could once someone could stay with Lu.
I was at home and headed on a FaceTime call with Ian and Dr. Tel.
Dr. Tel told us news we weren’t expecting and did not want to hear. He said a valve which seemed fine before suddenly started leaking and there was no other way to fix it but to go back in and look at the heart to see what could be done to stop the leak. To attempt to repair the valve.
Go back in….to the beautiful heart? No thank you. We had a hole, and we fixed the hole. No more cutting and looking at the beautiful heart.
I make some slight humor here, because, you almost have to. It was very tense.
Perhaps the worst part about that awful phone call was the plot twist that Dr. Tel lost his enthusiasm for a moment. He looked… so sad.
I can see why. He loves his patients and their families. He does not want to see them have to go through another invasive surgery. For a baby.
It was all too much.
We were finally out of sternal precautions (look at my medical lingo). Sammy already had a scar! How soon was too soon to go back into a baby whose heart was still healing?
No, no, no.
I think Dr. Tel always believed only good things for Sammy, even at that moment. But it still broke all our hearts.
That’s a good doctor.
And it’s a reminder of the humanness of us all.
In the words of one of my favorites, Ellie Holcomb:
“When we break wide open, we’re all the same.”
Dr. Tel watched us in some of our greatest moments of pain. He heard me crying on that FaceTime call and didn’t try to make it better. He sat with us. After a few minutes he told the other doctor in the room, “I’ll talk to them a bit more, I’ve known them since utero.”
In other words, I get it.
It was a rare and special thing that the only people in the world (except our close family) who could possibly understand the level of specific intensity we were going through were doctors. Sometimes we think of doctors as distant humans, but not doctors who work on heart babies. I can assure you.
Especially the ones we got close to, and especially this heart doctor who didn’t want to see us go through it all again. During Christmas.
Dr. Tel checked in with us over his Christmas holiday when we were in the hospital, and he visited as soon as he got back.
Then, on January 3 of this year, we had to watch Sammy get wheeled off for the second time in three months to the operating room.
Dr. Tel gave us a Christmas gift I never thought I’d need.
He told us he would be in there with him during the surgery. Dr. Tel made himself available to see Sammy’s real life heart for himself, to be present for our surgeon. After all, he knew Sammy’s heart best.
I was not anticipating tearing up during so much of this essay, but I’m sure you can see why.
God gave us some precious doctors, especially a cardiologist and a surgeon who did everything they could for Sammy.
Jesus says He never leaves us. And still, as parents, we want to be a sure presence for our kids. I knew God was with him on his surgery day, and yet, in my humanness, I wanted to be there, too. I didn’t want to leave my baby again. I didn’t want him to go to an operating room, again.
Dr. Tel stood in for me.
Someone who loved his heart from the beginning got to be there in its worst moment.
I was never so happy when Dr. Tel snuck out of the OR early to come to us in the waiting room, all smiles, letting us know it had gone well.
Dr. Tel still sees Sammy and his heart through. We still visit with him every month right now and we joke with him during less intense echocardiograms. We don’t get to talk as much, but maybe that’s a good thing. Sammy is growing and thriving and wireless! No cords, no oxygen, no monitors.
Maybe Dr. Tel can spend more of his off hours with another baby. Or maybe he can rest. I hope he can rest.
It makes me laugh to think about rest, because there’s very little resting all around on a cardiac unit.
He often told us to get rest, to TRY at least to rest.
And that we were doing a good job.
What I think about sometimes is how wonderful Sammy was to Dr. Tel, when his heart was at its worst.
I think about how Dr. Tel also only had good things to say about us, as his parents, even though we were often tired, restless, worried, crying (me).
I talk about our humanness in this piece and that’s what I hope rings true.
There’s something deep I saw in the human condition that has changed me after my experiences in the hospital. After my experiences with heart doctors.
And I am deeply grateful that Dr. Tel saw so early on what we know is true. There is a wholeness and belovedness and absolute beauty in all people.
In Sammy.
Made in the image of God. From the start, fearfully and wonderfully made.
Loved.
Sammy is someone worth knowing, worth fighting for. Someone who has an infinite amount of beautiful things to know about him. Not to mention his always, since the beginning, beautiful heart.
❤️
Thank you to Dr. Puntel for being on Team Sammy since we met you. You’ve helped me survive and because of you, my own heart beats stronger.
Thank you for sharing this beautiful part of Sammy's story. Dr. Tel sounds like an absolute angel!
❤️