‘After losing twins, we thought we’d paid our dues. Our life’s suffering was now complete. We were wrong.’: Mom loses ‘rainbow baby’ with heart defects, knows she will meet him ‘in heaven’

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“‘He’s a sick guy.’ The pediatric cardiologist affirmed with an almost flippancy—like, you know, yeah he’s dying but like—he’s sick. Of course he’s dying. He’s a sick guy.

As if he were an old man who’d chosen to smoke and degrade his body all life long—of course death would follow suit. Duh.

At least, that’s the tone with which my mama bear ears heard these extremely unhelpful words as my innocent, 10-week-old baby who’d endured 5 surgeries and countless procedures lied dying in his hospital bed. Come to think of it, it reminded me a bit of my obstetrician from the year prior’s feeble attempts to comfort me post-miscarriage of identical twins: ‘Miscarriages are so common. They occur in 25% of all pregnancies.’ As if, you know, I’d signed up for this, obviously—I mean, with how common miscarriage is—with twins no less—why the long face? Didn’t I know to expect this?

When my high school sweetheart and I decided to grow our family after 5 years of marriage, we had no clue the battles we’d face along the way. We’d had fairly smooth, straightforward lives up to this point, living life in as typical a way as a couple of 20-somethings could. After my missed miscarriage of identical twins, I thought for sure we’d paid our dues—our life’s suffering was now complete. Sure, we’d have more bumps along the way, such is life—but as far as real, deep-seated grief? Nothing would top losing 2 babies at once before ever having gotten to know them. When I got another positive pregnancy test after my D&C, we were overjoyed—new life was coming! But our 20-week anatomy scan told us this new life would come with trials unlike anything we could have ever been prepared for. Major heart defects, including a missing chamber, faulty valves, and the aorta being split into 2 pieces, would require immediate, complex surgery—so much so that our local, much-respected children’s hospital wouldn’t be able to serve the needs of our rainbow baby.

Pregnant woman smiles as she sits on couch next to husband who has hand on her stomach
Chelsea Anderson Photography

We were instructed to relocate—to move out-of-state to a very specialized children’s hospital for our baby to be born and operated on. We set up the nursery at home, packed up our things, and drove my swollen belly all the way from Norfolk, Virginia, to Philadelphia, Pennsylvania, where our Benjamin would soon be born, and undergo not 1, but 2, open heart surgeries, along with a tracheotomy, a G tube surgery, and an emergency stomach repair when his G tube tore and leaking abdominal contents nearly killed him before his own heart did.

Woman smiles as she sits in NICU with her newborn who is on feeding tube
Courtesy of Holly Colonna
Newborn with charge syndrome and heart defects lays on his back with trach
Courtesy of Holly Colonna

Because Benjamin didn’t only have heart problems—he had CHARGE Syndrome, a rare genetic disorder which meant he would potentially be born both blind AND deaf—and that detail was tacked on after a whole host of other things gone-wrong with our precious firstborn son, like a bilateral cleft lip and palate. Still, doctors were hopeful, and talks of home were on the horizon.

Until they weren’t any longer.

‘He’s a sick guy.’

Mother leans over to kiss newborn who lays in NICU and will soon die
Courtesy of Holly Colonna

We packed up our things, checked out of the Cardiac Intensive Care Unit, and drove our swollen eyes all the way back home to Norfolk where we’d go on to bury sweet Benjamin.

Grief is a strange monster—for me, as a Christ-follower, grief can take the shape of a friend, linking me to Jesus, Man of Many Sorrows, whose Father God knows what it’s like to lose an innocent Son. At the same time, for me, as a mama bear, grief can make every cell of my person swell up with rage, anger, bitterness as I think of my own child’s lifeless body lying just down the road from me in a grave—is he cold when it snows? Does he get lonely? But—no! He’s not there, I furiously remind myself with relief. He’s redeemed, restored, remade in heaven and because of Christ, I’ll get to be reunited with him—and not only him, but Christ our redeemer—when my time comes. But my goodness, is it hard for me to always feel that emotionally when I would have given my life 10 times over for my son to have had one good day in the CICU. And thus the grace of God is there—that in our weakness, He is strong. That I don’t have to—I can’t—always get there emotionally, to always convince myself that my baby is taken care of. That whether or not I feel that from an emotional standpoint, the truth remains: He has gone to prepare a place for us in His Father’s house. Oh, do I long to share heavenly dwellings with my son and our Creator!

Mother sits in NICU looking down at newborn in her lap with heart issues and trach
Courtesy of Holly Colonna

I’ve since gone on to deliver 2 more babies—twins, again. Fraternal, this time. Almost 2 and a half, they are, as we approach their big brother’s 4th birthday this spring. My mothering journey continued in a tumultuous way, with a challenging twins delivery, a darling pair of colicky babies, and a generous dose of postpartum anxiety. The Lord seems to be bent on keeping me in need of Him, on keeping me dependent on what only He can provide—the grace and strength for one day at a time.

My toddler twins have The Lord’s Prayer memorized at this point, as we model the prayer for daily bread. Life after loss isn’t easy, but my goodness is it rich—linked in such a way to eternal restoration that would never be possible if not for the bitter fruit of suffering. All glory to God, who takes what the enemy means for evil and uses it for our good and His glory. Whether miscarriage, child loss, or postpartum anxiety, we serve a high priest who empathizes with us in our weakness.

‘He’s a sick guy.’ The good news of the Gospel is that Christ did not come for the healthy, but the sick. Should we remain in a place of constant neediness for the Gospel, we can be assured that He will meet us there with grace one day at a time, until we meet in heavenly restoration and are made fully healthy and new, once and for all.”

Husband and wife sit on floor of home smiling as they hold their newborn twin with picture of their deceased first baby in front of them
Courtesy of Holly Colonna

This story was submitted to Love What Matters by Holly Colonna of Virginia Beach, Virginia. You can follow her journey on Instagram and on her blogDo you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.

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