Checklist for those who are pregnant now…
DURING THE PREGNANCY
· Take photos of you pregnant.
· Name the babies and call them by name.
· ASK for a picture (of both/all babies) whenever you have an ultrasound.
· Talk and sing to the babies – give the sick baby a “lifetime” of love…get to know them, who kicks where, etc.
· Keep a journal. One mother also suggests getting a scrapbook or baby book or other way to gather mementos as you go along, or to make it easier after the birth while caring for a newborn, to have and organize the things you’ll want.
· If people who don’t know you ask about your pregnancy, consider saying, “I’m pregnant with twins, one is healthy and one will not make it.”
· Don’t allow your medical caregivers to ignore the sick baby, or your emotions, or tell you “just focus on the healthy baby.” One mother who was going longer with one triplet and knowing ahead with another even found herself able to go off the very strong allergy medications she was having to take, after she insisted on her right to grieve and to plan appropriately for the birth.
· Talk as much as you can to your husband, your family, your friends. If you have other children, there are books on talking to children about death which may be helpful in talking to and preparing them for the birth. Consider talking with someone in CLIMB who has had a similar experience.
· Baby shower: know whether you want one or not (or when you want it to be)…If you do, it can be a good time to “educate” friends and relatives. Consider handing out some literature from CLIMB on the death of an infant twin, or something available from loss groups which tells people what to say (and not say!) when a baby dies. Also, you could talk with the hostess about doing something in honor of the twin, or “the twins” (or “the triplets” or more). Even though a shower is supposed to be a happy time, point out to friends that now it is also a sad time. Otherwise it’s too easy for people to act like the twin never existed, no one will mention the “sick” baby, and the shower will be painful instead of another special memory.
PREPARING FOR THE BIRTH
· Make funeral/cemetery arrangements once you hit 20 weeks. There are options: some have brought their baby home for a service at home before the burial or cremation.
· If you would like a religious or memorial ceremony, make arrangements with your priest, minister or other person. Many have found it meaningful to have a service in the hospital that combines a baptism for the survivor with a memorial for the twin or multiple who died.
· Have clothing and any special items ready for the baby to be buried in, and consider having a special outfit ready for the survivor to go home in. One family purchased matching gold necklaces and placed one on their twin who died, and the survivor will have hers to wear.
· Look into organ donations if that would be meaningful to you (though it may not be possible).
· Check out the NICU and staff and try to ask any questions, so that it will not be totally unfamiliar if one or both/all babies are there.
· Get information about the sick baby’s illness, and have an idea of what to expect as far as how the baby will look. However, get information from as many sources as you can, and don’t be too disturbed by doctors or others saying, “It’ll look pretty bad”, “It won’t look normal”, “I wouldn’t see the baby if I were you”, etc. – most parents have found that their baby looked far better than what their imaginations and other people’s comments had led them to believe – and they focus on the beauty of their child and notice that more than the imperfections. Some had almost chosen not to see their child because of what others said, and have been VERY glad they did see him or her. Also, the baby can be sensitively wrapped by staff (for example, a cap for a baby with anencephaly).
· Plan in advance for which relatives and friends you would like to have meet the baby, and how any older children you have will be able to do so. This helps to make the baby a real person to other loved ones, one who can be remembered naturally, and other siblings even if very young appreciate knowing that they got to meet the baby and say goodbye.
· Consider asking a trusted friend or relative to be your “birth assistant”. Husbands are so emotionally involved that it can be hard for them to carry out your wishes – and they are grieving too. Having someone who is not quite as emotionally involved and knows you and your wishes can do so much to make sure that they are carried out, no matter how hectic things get. With this person and then with your doctor, you can make and discuss a “birth plan” which takes all your wishes into consideration. If at all possible, it is good to discuss your plan and needs with the hospital social worker, but some have been disappointed by expecting too much from staff and it’s wise to prepare yourself and have an assistant whom you can count on.
· Appendix 3 of Elizabeth Noble’s Having Twins has a birth plan guide for when a twin dies, and guidelines for staff.
THE BIRTH AND AFTERWARD
· Try to avoid general anesthesia and mind-fogging drugs.
· Get many photos (NO polaroids, use a “real” camera with 35 mm film or digital and if desired also a video camera). Photos are one of the most cherished mementos of your baby. Take as many pictures as you can. Many people have deep regrets in the area of photos. This is another way that your birth assistant can be very helpful.
–both/all babies together
–Mom holding baby (even if baby has already died), Mom holding both/all babies
– and the same for Dad, if he wishes. A photo of the whole family including the baby who died.
–siblings (if any) holding baby
· Hold the baby for as long as you can, and more than once, for example later at the funeral home also. This is another area of regret for many. Some people didn’t think they had the emotional stamina/composure to hold their dying or dead baby (and weren’t encouraged by their doctor or staff) and have had to struggle with their regrets at not having this opportunity while it was possible. Their advice to you would be, “You CAN do it. Yes, you might feel as though you would fall apart but you will be okay.” Also, you can ask to see and hold the baby the next day (if not possible after birth, or if you want to see him or her again) – the baby is yours, not the hospital’s, and you have the need and right to see him as often as you want during the days that you are in the hospital. It is not necessary to settle for a few foggy minutes after the birth when this is the time you will have here on earth with this baby.
If at all possible, hold and photograph the babies together. One picture will truly be worth a thousand words later, including for the survivor, who will also know that he got to meet and say goodbye to his twin (or higher multiple sibling). For the parents, it makes the experience of having had twin or triplets real in a way that promotes healing later, and special memories that are cherished later when the loss is not so painful.
· Make sure you get all the mementos you want – locks of hair, hand- and footprints of both/all babies taken at the same time, the blanket your baby was wrapped in, the crib card if there was one, and anything else that came in contact with your baby that would be meaningful to have later…nothing is too unimportant to ask for!
· Don’t go to the maternity floor if you prefer not to – get a private room away from the moms who are “only” happy. If it’s a larger hospital, be aware that seeing or hearing of healthy twins will be painful. Arrange for your husband/partner to stay with you. Put up a “No Visitors” sign if you want, you have the right to mourn in this bittersweet time, and some time to do so before having fulltime care of a newborn when you go home can be very helpful.
· Be aware that with some conditions, babies may die just before birth, or at birth, or live for hours, days, or more. You may find that your baby is not alive when they are born. Many others die within a few minutes or hours. If it seems that your baby may live somewhat longer past birth, consider your plans for how to spend whatever time that may be, and explore your options – some families have brought the sick baby (if stable enough) home to live and die there (and we have some comments and contacts available for those who may find themselves in this situation). If your sick baby does live past birth, having another tiny baby who may be in the NICU, or may need your total care as a newborn, will make this a very demanding time in that way – ask for all the help and support you can.
· Consider sending a birth announcement -it’s a way to honor your baby and “your twins” or triplets or more, and let others know how you feel.
· Realize that there will always be people who “forget” your baby who died.
· Never be afraid to cry.
· Many people have felt very much helped by participating in infant loss support groups, even though this may feel difficult for you to consider while still pregnant, or with a newborn survivor. Check out your nearest group by talking to the leader by phone and see if they are receptive to support for someone in your situation. Also, check with them and us for books on infant loss and the grieving process.
· You don’t have to be “losing it” to need counseling – everything you are having to deal with is plenty of reason for a good counselor to be an “insurance policy” on your sanity! Many have felt very much helped by someone they could count on to talk to who focuses on their needs.
Do what you think is right! Family, friends and others can’t know what is right for you!