There are many initiatives and projects that we are working on. Our dreams and the needs never stop, it seems. Here are some of the 2013-2014 high priorities. Any help you can give in learning about them and spreading the work (or offering to help) would be greatly appreciated.
Loss Doulas International (created by Sherokee Ilse and Dr. Pat Flynn) has developed an amazing, in depth, “Baby Loss Family Advisor/Loss Doula®” Certification Program! Every community needs well-trained, compassionate advocates to offer continuous care to bereaved parents from the time of the bad news…through the early days and weeks of grieving.
LDI makes birth planning and companioning available to families in need when their child is to be born still, miscarried, or has a condition that is incompatible with life. Loss doulas assist parents and their support system ideally from the time they learn of the diagnosis, through birth, planning of the memorial/funeral service. Certified or In Training Loss Doulas may be located at the website www.LossDoulasInternational.com.
1. Make sure EVERY hospital gives out practical literature on the decisions that need to be made (seeing, holding, family pictures, involving children, etc) AND that explains the "why" of these decisions. Well thought out decisions help in the recovery and are of support over time. Too many staff give out a simple brochure that seems to demean the significance of such a loss, or they give out a packet of various materials that are about subjects down the road (larger books, materials describing grief, etc). While these may be very useful at sometime, rarely are they helpful at the time.
Instead, simple, readable materials that address what is important at the time, such as decision-making, memory-making, saying hello and goodbye, are vital for well-informed decisions. Empty Arms and When Hello Means Goodbye are the two main books that accomplish this goal.
2. Don't rush to the hospital after the baby has died...unless a health crisis/emergency for mom.. Doctors, clinics, and midwives could be giving support and resources for preparation, as well as reasons why not to rush to the hospital to deliver a baby who has died (unless mom's health is in danger). Check out our NEW www.lossdoulasinternational.com service to find a Loss Doula/Parent Advocate who can help you immediately via phone or email, no matter where you are. You can receive help with preparation, decision-making, birth preferences planning, suggestions for memory-making, hospital discharge planning, grief and healing, return to work issues, etc..
3. Parents have the right to have their baby at home for some hours after death, or to die. Visit the section Baby Home Time that explains this further - why, how long it has been done, which countries and cultures presently do this, and how to make this happen for yourself or someone you care for after their baby dies. This includes miscarriage, stillbirth, neonatal deaths, and even babies who die of SIDS or other losses. It may be that an autopsy needs to be performed first, but these little ones can be prepared to be held at home for a few hours or even overnight (if they are cooled appropriately) in order for the family to have a more calm time to be with their child and say goodbye.
4. Parents have the right to receive literature, support, pictures, and mementos at the time of a miscarriage. Women/couples who experience a miscarriage are still given care out of what I call 'the Dark Ages.' Parents are often not given respect or told what is about to happen, especially when they are in the ER/ED and there are other serious looking trauma cases around them. A miscarriage looks like a minor event to many health care professionals, though clearly not all!
If the family views the miscarriage as a baby, then s/he deserves to be treated as such, no matter the size or gestational age. Being able to see, hold, take control of (without the requirement of a funeral director if they so choose), to be given appropriate, compassionate literature, and to have the opportunity to have some mementos ought to be the standard of care in every facility. We need to fight for this right together.
Read more about Miscarriage in that section of the website. And check out our Miscarriage: A Shattered Dream in our Healing Hearts eShop.
5. Prevention matters – join us in a revolution.
For decades (or longer) there has been much complacency and outright acceptance about miscarriage, stillbirth and even neonatal death (though there have been some premature prevention campaigns), rather than outrage which should have led to decades of research by now. Many doctors and even midwives won’t even say the word stillbirth and quite a few still shy away from miscarriage. When asked why, they often say, “We don’t want to scare moms.”
SIDS and sleeping baby on her/his back is a common conversation. Why isn’t that scaring parents? A response we have heard is, “Well, they can do something about it. Stillbirth just happens. There is nothing we can do.”
Why do they suggest that nothing can be done? One reason may be that there is so little research they have nothing to offer moms. So it is the chicken and egg – we don’t know why it happens or how to stop it, so we won’t tell moms about it to avoid scaring her and those babies will just die.
This no longer flies! We MUST not allow this archaic and inexcusable answer to be given any longer. It is time to band together and unify our voices. Join the Action for Stillbirth Awareness and Prevention Coalition – www.StopStillbirthASAP.org today.
Tell your doctor, newspapers, television stations and the NICHD, Maternal Child Health, and March of Dimes. Raise money for research and attend events such as the upcoming Stillbirth Summit in Minneapolis (where parents are sought to be involved in the conversations and the fee to attend is minimal). First Candle also raises money for research. Both are real advocates for our babies
Kick Counts. Learn about a few things we can do at this time. Kick (movement) counting in the last two months of pregnancy. Take it seriously. If you feel movement patterns have changed or you are pretty convinced something is not right…go to the ER or your doctor immediately. Insist on a lengthy time of monitoring your baby’s heartrate (more than 30 minutes). Keep an eye and trust your instincts.
I personally know of two babies that were surely saved because the moms knew something was wrong and their medical providers tried to send them home. Instead, they stayed and insisted on more monitoring and to wait until their own doctor came in. Both cases resulted in babies who barely made it even after emergency C-sections.
Research is also needed on how families cope after poor/less than excellent care and gold standard care. I have noticed over and over again that regrets haunt and families find it hard to move forward after receiving poor care. When they don't have their strong, positive, inclusive memories, they don't have that foundation that supports them with good memories over time. We'd like to see some research on grieving and healing after specific levels of care.
If you don’t advocate for your baby, who will? Trust yourself and be courageous.
In regards to miscarriage – there may be little to be done at this time in an impending miscarriage, though there may be things that could reduce your risk. However, there have been cases when a procedure was recommended (induction with a D & C) that would have removed the baby’s body from mom. In a few cases that, again, I know of personally, the moms decided to wait until they could get an ultrasound and blood test to test pregnancy hormones to see if they were rising (likely still pregnant) or dropping (likely miscarriage and pregnancy is not progressing). It is possible that early in pregnancy even when no heartbeat can be found, the baby is still viable. The bleeding and cramping could be the result of the loss of a twin or some other unexplainable reason.
These examples are not meant to be medical advice or to make you any promises. Rather, they are to suggest that you be cautious before ending the pregnancy, unless your health is in jeopardy, and to be your child’s advocate prior to birth just as you would be after their birth.
One response to this beautiful blog says it all.
Why aren’t the drs. doing anything? If they put half as much energy into keeping wanted babies alive instead of trying to keep unwanted babies (abortion) alive maybe stillborns would be a thing of the past. The cord accidents are preventable. If they were told what to watch for my grandson would be with us. My daughter was 37 weeks and had low bp, high heart rate, her baby had low heart rate, extreme movement for two days and hiccups very often. We have done a lot of googling and read these were symptoms of cord accidents. The Dr said she was low on fluids Monday. Tuesday my daughter sent me a text of baby being very active, Wednesday evening she said she hadn’t felt movement drs checked and he was gone. They induced her and he was born still on Thursday. This not wanting to scare the mothers is crap. Being scared for 9 months beats the heck out of living the rest of their lives without that child.” RaeAnn