BY ASHLEY WADDELL TINGSTAD

We welcome a new voice to the CPN blog: mom Ashley, mother of three. Ashley lives in Michigan and was referred to CPN by a former colleague who lives in Massachusetts and found CPN when her own child was born with medical challenges. Ashley’s baby, Viggo, died at six months from a very rare genetic condition. In conversations with CPN following his death, Ashley spoke openly about feelings of shock, confusion, acceptance, and courage. She shared that when palliative care became part of her son’s medical team, it was a great relief. Ashley’s ongoing personal exploration offers wisdom to parents and the clinicians caring for babies whose earliest days, weeks, and months following birth are ones of deep uncertainty. 

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You don’t recognize me, but I recognize you, though it pains me to do so. I see you, held together with fresh stitches, supporting yourself on wobbly feet over Viggo’s isolette. This is a nightmare you are waiting to wake up from. You want to—need to-–escape. Yet you are taking your ibuprofen and Tylenol on schedule and starting to pump breast milk, even though your baby cannot be fed at all right now, and you only held him once, and your hormones are all over the place, and your body and mind are trying to catch up with the present reality.

Everything about this situation is wrong. The emergency C-section at 32 weeks and 5 days. Viggo’s club feet. His little imperforate anus, barely a pin prick, unable to pass more than a small black pearl of meconium. 

He has a huge, unwieldy C-PAP lodged up his tiny nostrils, obscuring most of his face, and held in place by a cap that covers the other half of his head. You can’t really see his features, and you can’t breathe in the scent of his newborn scalp. His limbs are as fragile as butterfly wings, fingers too long, feet curled in on themselves. He has so many tubes and lines running in and out of his body, you are afraid to hold him, to touch him. He is laying in a heated incubator, enclosed except for arm holes on the sides where nurses can reach in to change his diapers and adjust what needs adjusting. It will be nearly two weeks before you pluck up the courage to change his diaper yourself.

Now for the really hard stuff. You don’t recognize him as your baby. You see him. You believe intellectually that he came from your body. But you don’t FEEL him as your child. The connection you had at birth with your other babies, the easy transfer from womb to chest, the instant recognition—it’s just not there. You cannot confess this to anyone. You must deny it to yourself as well. But deep inside, behind the curtain of language, the alienation is terror. 

You are a mother. You love your children. You love this fragile, wounded, traumatized, premature baby. But if you could close your eyes and take it all back right now, you would. You would take back wanting this third child when your family could have been complete and relatively uncomplicated with two. It is the most transgressive and cowardly thought you’ve ever had, and you are ashamed. But yes, you would take it all back. 

Please, don’t hate yourself for feeling this way. Don’t hate yourself for feeling unable to offer Viggo your whole soul right now. You can’t remember that you and Viggo bonded deeply during your pregnancy. You’ve lost touch with your memory of all those mornings practicing yoga together, all those afternoons in the office while he kicked and tumbled, all those lullabies and caresses before sleep.  Here, in this body and in this moment, the forgetting, brokenness and alienation are biological. They are the result of a traumatic interruption to the “golden hour” of mother-baby bonding, and all the hours afterward. Viggo forgives you. You will forgive yourself.

I know you are still waiting for the surgeon to come and figure out how to make it possible for Viggo to be nourished. You, who breastfed your other children on demand for years, like it was the easiest thing in the world, cannot feed this baby! You are powerless to nurture him. It’s unnatural, unfathomable, unacceptable. You are ancillary to his care and survival at the moment—if it were up to you to save him, he would already be dead. This is fact. This is debilitating. 

Let me validate you: this feels like a nightmare because it is.

Instead of being surrounded by family and friends, instead of your two excited and loving older children kissing their new baby brother, your room is full of residents, fellows, and attendings. It seems they are always traveling in packs, wheeling their laptop stands and filling this tiny room at the most unpredictable moments. They come and they say nothing that makes sense. Why are they scanning every organ? Why won’t they explain why? Are they explaining and you just cannot hear them, or comprehend them? From a year in the future, I cannot tell you, because I still do not know. My memory is as dreamlike as your experience right now. The room is dark, the blue lights illuminate their faces, eerie as a Van-Goghian nightmare. Someone said “vacteral” which turns out to be VACTRL, which is a syndrome they think Viggo might have. 

There will be several more theories, several more potentially horrific diagnoses and prognoses, several more scans and tests, and oh so much waiting and uncertainty, on this diagnostic journey. The next two weeks will be some of the darkest of your life.

I have no good advice for you. I cannot fix any of this, though I would a thousand times if I could. A thousand times a thousand. I just want to tell you: I see you. I love you. You are doing a good job, just by being in that room right now. You didn’t do anything wrong to make this happen. You have permission to feel all the feelings. Just please don’t judge yourself for any of them. 

Remember how it felt last night, six hours after he was born, when you were finally able to hold Viggo for the first time? You were afraid. You felt so disconnected, dissociated, disoriented. The nurses backed your wheelchair up to his incubator. It took two of them to arrange all of his lines and tubes and lift him over your head and onto your chest. He was like a broken baby bird, all four pounds of him, and you fumbled as you tried to figure out where to put your hands.

But then. Then. He melted into you. You melted into him. Breath and blood slowed down. Body heavy. Heart to heart, merging. You couldn’t smell or kiss his head, but you felt it—the ancient medicine of connection—coursing through both of you. He is yours, and you are his. 

Yes, he is your baby.

That moment—not anything I can say from this future year-–is all you need. 

I guess I do have some advice.

Don’t be afraid of Viggo. There is plenty to be afraid of right now, but not him. You must face this hard place together, heart to heart. Hold him as often as you can. Let him feel the rise and fall of your chest, and your warmth. When you can’t hold him, touch him. Let him hear your voice. Singing, reading, praying. Being with you is his best medicine, and yours as well. What is good for the baby is good for the mama.

Everything is broken right now. Yes, it is. The brokenness is devastating and terrifying. But there is so much love in this brokenness. Love carries you when everything else falls away. So, whatever you need to do to make space for love, do that.

Ashley Waddell Tingstad is an estate planner in Ann Arbor, Michigan. She is the wife of a veteran and the mother of three. Her son, Viggo Rick, was born with a rare genetic condition and died at six months of age. Mothering and grieving Viggo has changed Ashley in the most profound ways. She is dedicated to helping families mitigate trauma and suffering in situations where there will be no “happy ending.” She writes about her journey here, at momherenow.com, and on Facebook @momherenow. Ashley teaches her older children that there is no such thing as bad weather, only bad clothes. She is a dedicated practitioner of ashtanga yoga.

Ashley is a 2022-23 CPN Blogger in Residence, an opportunity available through support from Sanofi.