Potter’s syndrome birth plan

I’m sharing this in case anyone preparing for the death of their newborn comes across my blog. I prepared this with some help from the Potter’s syndrome website, and I’m glad I had everything written out beforehand so I didn’t need to spend much energy explaining what I wanted to have happen in the hospital. (Also, the volunteer at the hospital said I was really well prepared. Go me!)

Birth plan for Mika & Jarom 
Baby: Christian

We would like the door to remain closed as much as possible.

Our biggest hope is that we will be able to hold our baby alive, even if only for a few minutes. Because he is breech, please make every endeavor to help Mika deliver him quickly, without harm to the baby.

Mika is not planning on having an epidural, but may change her mind depending on how the delivery is going.

We will have a photographer, as well as our parents, present during delivery. Mika would like to have the men exit the room when a nurse comes in to check how labor is progressing. No other visitors (except those noted below) should be allowed in without express permission from us.

When the baby is delivered, we want to hold him immediately. Please delay any non-urgent procedures. If he is born alive, we want to delay cord-clamping. We would like him to be washed/cleaned off while we hold him.

If circumstances permit, our bishop will come to oversee christening of the baby. This would need to be done quickly due to Christian’s extremely short expected lifespan, so we appreciate assistance in getting the bishop to our room as soon as possible when Christian arrives.

A friend will be coming to take imprints of Christian’s feet.

We would like time alone with the baby and our parents (the photographer may stay for this). We do not want to feel pressured to give his body back before we’re ready.

If there is a social worker, grief counselor, or other volunteer available to speak with us, we would like to have them come in.

We are planning to do a burial through Wheeler Mortuary in Springville. We request that the hospital staff alert them at the appropriate time that Christian’s body is ready to be picked up from the hospital morgue.

We would like to keep the baby’s blanket and hat as mementos. If possible, we would like a lock of his hair (if there is any) and any hospital bracelets or bassinet cards. If there are other items you think we may appreciate, please send them with us. We want to know his weight and length before we leave the hospital.

Once we feel ready, we would like Mika to be discharged – without staying overnight, if possible. Please include any necessary prescriptions, including something to help Mika sleep.

—

A note: almost everything went according to the plan we prepared. We were able to hold Christian, bless him, wash him, dress him, and stay with him as long as we wanted. My OB sent me home with a generous supply of Ambien to help me sleep. As I mentioned before, we were given a beautiful box of mementos. One of the few things that didn’t go as planned was the epidural, which I had to get when it looked like there might be an emergency C-section. Thankfully, the hospital staff followed our wishes as closely as possible.

If your baby has a birth defect and neonatal death is a certainty, I strongly recommend putting together a birth plan. Being at the hospital is stressful, sad, and physically and emotionally draining, so spend a while before then thinking of how you want the day to go. You can contact Now I Lay Me Down to Sleep to arrange for a professional photographer to be with you in the hospital, free of charge, to have some beautiful pictures of you and your baby. I also suggest reading Still Standing, a magazine that addresses child loss and infertility. And, of course, get in touch with me if you want.

Anguish

No matter how often I tell myself to expect to come down after a period of good days, it always shocks me that I can still feel so miserable. After the baby shower I hosted recently, the whole house was clean, we were eating dinner at the kitchen table every night, and I was doing really well. Of course, it didn’t last.

I know it’s logical and normal and expected that I’ll have a hard time for months, years to come. But on some level I keep hoping that when I feel good, it’s because I’ve made great progress toward healing and things will keep getting better. Overall, yes, I do think I’m making progress and I feel much better than I did four months ago – but how foolish of me to hope there wouldn’t be any more pain.

I hate seeing babies. I don’t hate babies – I just can’t stand the anguish of having buried my baby. Of not only knowing but of feeling, over and over again, that I’ll never hold Christian or watch him grow up or send him to his room for being naughty. He’s missing from my life and it’s a huge, gaping hole. I hate how severely grief hurts. Before all of this, “grief” was just a word. Now it’s almost tangible.

On good days I barely remember what this despair is like. When it comes back, though, I wonder how I’ll ever get back to normal.