Your baby was given a fatal diagnosis – how do you prepare for delivery?

A reminder that this is written to share experiences and advice from another grieving mother. Medical decisions should be made with careful consideration after discussing your situation with your care provider.

Loss is complicated. And devastating. Being able to discuss questions with your care provider and loved ones is difficult, but important. You will be faced with some difficult decisions and knowing your options may help ease your mind during an extremely emotional time.

According to research, about 80% of pregnancy losses occur in the first trimester (up to 12 weeks) and another 5% occur during the 2nd trimester (up to 19 weeks). The later your pregnancy continues may give you more insight into your baby’s health conditions.

Additionally, it is estimated that 70% of all miscarriages are a result from a chromosomal abnormality simply by chance. This is not your fault, and you did not do anything wrong.

You may find out through blood work, an ultrasound, or at a doctor’s appointment to hear the words, “I’m sorry, your baby’s condition is incompatible with life.” This process may take a few days or a few
weeks for final confirmation.

Now when I say this is complicated, that is a massive understatement. There are so many variables including length of pregnancy, current health concerns, medical facility access, and probably a hundred other things to consider, but just remember that how you get to the decision for when and how you will
deliver is up to you and your doctor.

I was about 34 weeks pregnant when our daughter was given this diagnosis. After getting through the initial shock, my mind was going into overdrive with so many questions, fears, and concerns. I continued weekly doctor’s appointments to check on the heartbeat with the plan to continue to carry her until our due date. Silently waiting to see if you would hear that sweet sound, was honestly torture.

I give a lot of credit to our physician who was able to bring up different topics each week leading up to our anticipated delivery date. I felt a small sense of peace when we arrived at the hospital knowing that we had discussed so many decisions ahead of time – not being sleep deprived or in a rush – and we could simply focus on our baby.

For reference, we felt that our baby was relatively safe in utero, but if she survived delivery, we didn’t know if we would have minutes, hours, or days together.

In preparing for our planned delivery, these are decisions we discussed:

What is your baby’s name?

Do you know the sex of the baby? Have you picked out a name? Do you want the staff to refer to the baby in this way? Or just him/her/they? Do you want to call them this name now? Do you want the name written on everything?

Will you schedule or be induced for your delivery?

Does your baby’s condition limit the potential for your body to start labor on it’s own? Would a planned date help you make arrangements for other children’s care, family member’s availability, or a partner’s work schedule? Do you want to guarantee that your doctor will be present for delivery?

What items do you need for yourself and your baby?
With so many unknowns, it was easy to forget that I was still going to be going through labor. Having comfortable clothes, toiletries, snacks, cameras, and essentials are still needed. What do you want to bring for your baby?
Can you order preemie hats or outfits ahead of time? Do you have special blankets, books, or music you want to use?

Will you want video or photography?

Could a trusted friend or family member help? Would a nurse be able to assist? Can they call in someone when you are ready? Do you have a professional standing by?

Who do you want in the room and when?

When and how do you want your support system to be involved? Keep in mind, this can change hourly or daily. The hospitals can put a notice on the door for those who need permission or notification to enter like housekeeping, food service, medical staff, or visitors.

What type of pain management do you want?

You want to treasure every moment possible and be alert. Will this change your preferences for being able to think clearly or move freely?

Do you want the heart monitor on towards the end of the labor?

Delivery is stressful on any baby, but especially one that has a medical condition. Will you want to hear if there are changes? If you don’t have the monitor on and the baby has passed, will they tell you before or after the baby is placed on you?

Will your partner still want to cut the cord?

Given the situation, will that person feel any responsibility for cutting time short? Is this a ritual that is important to perform?

What type of care will your baby receive?

With this diagnosis, typical medical interventions are not performed. What type of comfort care will you want to use? If you sense pain, are there medicines you prefer to keep them comfortable?

Will you breastfeed your baby?

Can your baby latch on in their condition? Can you express milk and administer through a syringe? What other nutrition options do you have?

How long will you stay?

What is the hospital’s policy or your insurance policy? Will you want to take them home and if so at one point? If you leave, can the hospital still provide any assistance?

Will you take footprints and handprints?

Can you bring in ink, paint, paper, or canvases? What types of memorials can you bring in?

Do you want the hospital chaplain to visit?

Most hospitals provide one on staff, but perhaps you have a religious request of your own? Do you want them to come before or after they pass?

Have you chosen the burial method?

Will your baby be cremated or preserved for a funeral service? What happens in each of those processes? What are your options and who do you meet with?

When your baby passes away, what happens next?

Do you want to call in loved ones to say goodbye? Can the hospital aid in phone calls to a funeral home? Does the hospital provide a memorial kit and outfit for your baby to wear?

What type of emotional and physical support do you need?

Does the hospital have references you can use? Does your primary care provider have referrals?

Nothing can prepare you for losing a loved one, especially a child. Every person will go through a unique experience and grieve at a different pace. Give yourself patience and grace.

The team at Light After Loss Mn is committed to supporting you today and always.

You can contact us for any needs at:

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