Reflections from Families
Recovering from Infant Loss

The following is a collection of unedited responses from parents who were invited to share their thoughts with the participants of this conference. Parents representing eight different families contributed to this document.

1. As you think back to the people who encountered you in some sort of professional role surrounding and following your loss, what things did they do, say, or offer that were helpful to you?
• The things that were most helpful to us during our loss was just People reaching out and listening letting us cry & not saying anything just being there.
• words that still resonate with me today from the resident: "I want you to know that this is not an ordinary day for any of us here."
• The nurse putting an orange Courage bracelet on my wrist when we were in the middle of losing our babies, and saying "We're all praying for you."
• The angels who knit teeny caps and blankets for preterm infants, and the nurse who dressed our babies for us and brought them back into the room
• The pictures taken by the nurse. She was adept at taking photos that honored and respected them as little humans.
• The nurse who just came and sat with me while my husband went home to feed the dog, etc. so I wouldn't be alone. I hadn't asked, and didn't even know it was what I needed, but somehow she knew.
• The tone of the doctor who was with us throughout the day - she was the perfect mix of compassionate and matter-of-fact. At each stage of our loss, she told us what we were up against and what decisions we might need to make so that we had a little bit of time to discuss things before they became emergent.
• Referral to a funeral home that was familiar with handling infant funerals, and that offered monetary support
• Contact from a clergyperson who performed a naming ceremony after the deaths of our infants
• We still remember that the funeral director was one of the most compassionate people we met during this horrible time. He was sensitive to our needs, extremely caring, and did everything he could to help us honor our babies in the most respectful way possible.
• When Mariah died, the hospital staff were wonderful in all that they did for me and my family. As soon as we arrived at the hospital they contacted a close friend, my mother-in-law, and our parish priest. After these people arrived and we had support around us it was our priest that told us that Mariah was gone. What came next made a big difference in coping with our loss. A wonderful staff person explained to me what they had done to try to revive our precious girl. She described what we would see and then brought us to our daughter. Being given the opportunity to hold Mariah, kiss her, say goodbye, was essential in the process of grieving our loss. Those last moments with my daughter are very precious to me even now over 13 years later. Also, some of the staff from the emergency room and EMT's attended my daughters funeral. I was so moved by their compassion in this act. This meant so much to me and all our family to see that they were touched by our sweet girl and were moved to come to honor her.
• The practitioners at our OBGYN office called to check up on us repeatedly in those first weeks. I really appreciated their advice and willingness to see us anytime. They attended the service for our son, which meant a lot.
• The letters I received from nurses at the birthing center and Shep 5 were so meaningful. I recently had surgery at FAHC and was touched that the resident on duty when Hudson was born came to my room to visit with us.
• When your baby is alive for such a short time, you feel a real bond with the people who had the chance to meet him. Knowing those nurses and doctors felt the loss, too, made me feel more human and less like just another patient.
• One other thing that stands out in my mind was when an ER nurse asked about my religion and took care to baptize my baby. That was more meaningful to me than I can verbalize. It's so important for care-givers in that type of position to be trained regarding religious beliefs surrounding the death of an infant.
• Maggie McGuire - Therapist, let us work through the emotions and gently supported us as we sifted through the realm of disbelief, shock, fear, anger, blame, numbness, responsibility, lack of control and many other layers of sadness & grief. She cried with us.
• Dave Connor - Pastor, & Ann Martin / Co-Directors of the Lamoille Family Center, met with us and just supported us for the first two mornings after the baby's death. Dave helped us plan the two memorial services and brought us materials and ideas. He let us make the decisions, work through our planning processes and allowed us to cry and cried with us - both Ann and Dave met us where we were and were our companions through the first few days.
• Franne Whitney Nelson, Med. - Death Education Consultant - met with us several days after the baby s death and taught us about grief, our bodies and emotional responses, why we were feeling in various ways. She taught us to grieve at our own pace, what we could do and that we weren t crazy for feeling the things we were feeling. She cried with us and asked to see photos and wanted to know about Simon.
• Dr. Steve Shapiro - Office of the Chief Medical Examiner - VDH - clear, compassionate conversations, empathetic responses, answered all our questions and made himself fully available to talk anytime we need to reach him. Explained all he knew and gathered from the autopsy and all he could not know.
• Vermont Department of Health & Agency of Human Services Staff / Colleagues - they all listened, supported, asked questions, and continue to listen and remember Simon with me. Many of them attended the memorial service - so many cards - they were so wonderful.
• Kathy & Dick Roosa - our first (six weeks after the baby's death) couple who came to visit us and talked with us over the phone about Simon's death & who had experienced their own baby's death years earlier. Their kindness, empathy, support and ability to listen was the greatest gift of all.
• Dale Porter - EMS / Nurse & Asst. Med. Examiner - was the second to our home after we called 911, she gave us calm clear directions, explained to us what was happening and was as kind, empathetic and supportive as she could be. She stuck with us through the ambulance arrival, departure, met us at the hospital and helped us understand what was happening with the death investigation, police, funeral home contacts, and VDH OCM Autopsy processes / Dr.'s names to contact etc.
• In the early weeks, I just needed to tell Simon's story - like repeating it made it easier for me to accept Simon's death, to make it real and concrete. I wanted people to know that we loved him so much and we could not believe he was dead.
• Although I don't have complete faith in my memory of those first few hours, I seem to remember that every remark from the medical staff after my frantic arrival at the hospital was on the order of, "they are doing everything they can, but it doesn't look good". I think that kept me where I needed to be in order to be ready for what was coming.
• I remember being told that we would be able to be with our son after they finished cleaning him up. At that time I had no sense of future and it took awhile before I could see this as something I needed to do. That warning of the progress of things was of great value to me. The kindness and encouragement of the staff to sit with him, pick him up, hold him, leave him and return as much as I needed was far and away the most helpful aspect of the professionals I encountered.
• In that time I remember having to talk with an officer from the State Police. It is remarkable to this day that for all of the dysfunction that characterized my state, I recall bristling, though that is not a sufficient word to describe depth of emotion that surrounded the prospect implied by this conversation. I will always remember and be grateful for the impeccable manner in which this man conducted that interview. In retrospect, those feelings were a harbinger of the most horrendous dimension of this experience, the sense of guilt, failure, and self-flagellation that permeates every part of this experience. That he was able to keep this state neutral during the course of that conversation is still remarkable to me.
• A grief counselor's phrases, "thou shalt not should on thyself", and that "there is no particular way to grieve but the one that works for you", to this day, 15 years later, are still important to me.
• The first thing that the pediatrician in the ER said was - it's not your fault. He was also quick to point out the things I had been doing right - breastfeeding, not smoking. He also made sure to say that no one thought it was our fault, but we had to speak with the police because that's how things like this were handled. The kindest people were actually the people at the funeral home. Granted they deal with death and families all the time, but they were really the ones who were the most gentle.

2. As you think back to the people who encountered you in some sort of professional role surrounding and following your loss, what things did they do, say, or offer that were unhelpful or even hurtful?
• Some things that were hurtful and not helpful is when people would try to make you feel better by not talking about it or not acknowledging it in fear of upsetting us. Or when they would say he is better with God now. To me there was no place better for our son than in my arms not Gods.
• When the nurse took the babies from our room for the last time, she covered them up, including their faces, before she left the room. It still is one of my most horrible memories of that day. I wish she had waited until she was at least beyond the curtain in the room so that we didn't have to see that.
• A number of people who said "At least you still have your daughter". To us, this just devalued the lives we had lost. Of course we are eternally grateful for our daughter, but the fact that we do have another child did not lessen the loss of our twin infants.
• Moving us to a room other than where I had given birth. It felt like we were severing the connection with our babies. I wish we'd been able to stay where we were until we left the hospital.
• The social worker said there was no support group in our area, but that she knew 7-8 other couples who would probably participate, and that she was going to get one restarted. We never heard from her again.
• I know that when the nurse did a home visit in the days following Mariah's death she tried to help, but the one thing that remains in my mind was the endless statements about the definition of SIDS, the statistics given to us, and lastly, the questionnaire we went through. Although these questions have their purpose to someone, this process only served to make you question everything that you did with your child, and how you could possibly be to blame for her death. I recall that every time a question was asked that you answered yes there was a certain amount of guilt even if the nurse said that it was okay that you did this or that with the baby. Also, I know many that were reluctant to tell things that they may have done that could make them feel responsible, even if this were not the case. I understand that there is a reason for this information being gathered for statistical purposes, but do feel that the last thing I needed in these difficult days was to feel that my daughter's brief life was now being reduced to a sheath of papers about what had been fed to her, where and how she slept, people and activities in her environment. I believe that if this information is needed it certainly could wait, and that a questionnaire could be left with the parents to go through it alone and be able to turn it in anonymously. People just can't understand that when your child dies you feel so responsible even if you did nothing wrong. It is your child, and you provided the care for her life, so when this life is lost you feel enormous responsibility and guilt over things real or imagined when you think of what you did that you perhaps shouldn't have, what you didn't do that you could have. I have heard from others that they found, as I did, that this whole process was very painful. People felt put on the spot, felt that all that they had done with their child was now suspect, and that these questions now nagged at them. Why would they ask this or that? What does it have to do with our child's death? Ultimately, no one wants to end up feeling that their child is nothing more than a statistic in a file cabinet.
• Another thing that was difficult was being left a bunch of brochures about people to contact. It was so difficult to make those calls and tell the stranger on the other end of the phone who you were and why you were calling.
• Three things have struck me as particularly difficult. The first had to do with the support offered by the hospital social worker. I called her looking to find out if there were any other parents going through this that I could reach out to, either one-on-one or through a support group in Chittenden County. She did not return my first call, nor my second. On my third call, I reached her and she said she'd call me right back. She never did! I persisted but never did get the information I was looking for from her. In such a fragile state, when the smallest thing could reduce me to tears, here was the person whose job was to be available to me and she was giving me the run-around. It was incredibly hurtful.
• A second difficult event occurred several weeks after Hudson died. I got a pamphlet in the mail from the VT Department of Health about SIDS and a number to call for help. I dialed that number and was subsequently passed from one person to another. I talked to four different people and none had heard of the pamphlet or had any information at all related SIDS. It was such an isolating experience. I had taken the initiative to pick up the phone and call for help and not one person on the other end of the line knew what to do with me.
• Finally, it has been difficult to get results from the medical examination and the meeting that took place among all care-givers associated with our son after his death. It wasn't until months after this meeting that we were able to track down a verbal summation. It was acknowledged that there were communication breakdowns when it came to keeping us informed. While we understood the systemic problems, it was a minor consolation after months of wondering and the subsequent delay of some further genetic testing. It was very hurtful that keeping the parents informed wasn't a priority and a protocol to address this issue really should be created.
• It was protocol, but having to sit and recall everything with the police was not helpful. It felt like everything we said was going to be taken the wrong way or that they would interpret it in a way that made them believe we had done this. Then being told that they had to go to our house to investigate. When we got home they had not yet left and they said that they had to take our sheets because there was blood on them (William had been laying beside me) - and we let them because we thought we had to - but in retrospect just a few hours later we were so angry because NO there was no blood I know that 100%. But you can't even think afterwards, so we just went along with everything. THE MOST hurtful comments came from the person who did the autopsy - the chief medical examiner. You have to first understand that I felt like this was my fault and what I wanted the most was an answer as to why this happened, so I had something else to blame - so I was very anxious to speak about the autopsy. So his question to me was - how much do you weigh (because he was in bed beside me). He was also very quick to inform me that this was NOT a SIDS death because we were in bed. In my state of mind that simply said to me - this was your fault. I still struggle today because someone in a professional position reinforced to me what I was already feeling. I do remember somewhere along the line someone called and wanted to know if we could get together, but I recall that she wanted more details of what had happened, rather than to help me.
• We did not ask to travel with the baby in the ambulance - partly because they had him out the door so fast, we hardly knew was going on - it would have been helpful for someone to have asked us if we wanted to travel along with him. But we only realized that in hind site.
• Some ambiguity around how imperfect medical science can be. To know that we will never truly know why our baby died will always be difficult.

3. What, if anything, do you wish had been offered or available to you that wasn't?
• The only thing I wish I had was an answer.
• I think that having someone contact you who knows what has happened, and can relate to your loss, and can get you talking about it is the most crucial thing in the grieving process. Getting someone into a support group is so important. There is nothing better in my view than seeing and talking with real people who know what is happening with you. Who can share with you their experience. Such incredible bonds are made with those who can uniquely understand what you are thinking and feeling.
• A support network of people who had been through a similar experience that we could have tapped into immediately
• Some sort of "What to Expect When you Go Home" guide that would have helped us ease our transition back to pre-baby life, something with suggestions for things we couldn't even fathom we'd have to deal with and think about.
• A list of current resources for support. FAHC provides a folder of information that was helpful, but much of it is very outdated, so I found myself one day sitting on my bed wondering if I should just try to call the woman mentioned in the article from 1986 & I was that desperate for contact, but had no one to call that I thought would understand.
• When we left the ER without our baby, we were crushed, in shock and absolutely at a loss as to what to do next. Looking back, I am so surprised that my husband was allowed to get behind the wheel of a car. I am also surprised that no one from the hospital placed a follow up call to us.
• Little things would have meant a lot: letting us know we were welcome to spend as much time with our baby as we wanted; a ride home from a volunteer or calling a family member to come get us; a pamphlet with numbers to call for grief support or planning the service; a follow-up call from a social worker. I felt the care-givers did their best but were quite unprepared to handle such a charged event.
• I would have had many support resources available to me if I had left the hospital with a healthy baby - nurse visits, breast-feeding consultation, and even house-cleaning were offered. It seemed that because our baby had died, our care abruptly ended.
• During this first year, an infant loss support group in Chittenden County has been sorely missed. With a NICU as large as Fletcher Allen's, it's hard to believe that this resource is unavailable.
• Immediate or early contact with another person or couple who had also experienced a SIDS or SUDI death (this took us about 5-6 weeks to find). I did not want photo copied article(s) about loss, grief and death. I needed a book to read that was a close to my experience as possible. I found that on my own about 5 weeks after the baby's death. Then it took weeks to be back ordered and shipped - but reading it was some of my best release and therapy.
• Immediate contact by a trained bereavement counselor might have been helpful.
• An explanation about the difference between a death investigation and a criminal investigation or child abuse investigation.
• An explanation as to what the Child Fatality Review Committee was and why our "case" was being reviewed by a team of people - and no request for a release of confidentiality from us as parents. I still to this day don't know the extent of what was discussed or processed about my family there.
• Nothing really helps, so it's hard to say! It really did not feel that we were offered anything. There may have been a phone call from a nurse or some type of person, but I'm not sure. Obviously nothing that stands out. It did not feel that we were really reached out to by any health professionals - other than the pediatrician who took it upon himself to take action against the medical examiner for his comments to me. I felt that I had to make numerous phone calls in my search to find a counselor to speak with. We did receive a book - maybe from the State - and that was GREAT!! If there had been some other info it would have been even better - maybe a list of professional that specialize with infant loss or an organized support group (we had to search until we found one in St Johnsbury). I wish that someone had acknowledged the impact that the loss of our second son had on our first son. No one seemed concerned about the effect on him - even when I said I was concerned about how he was handling it. No one suggested or had any thing to help us with how to handle it with him. The whole family needs to be acknowledged.

4. Is there anything else you would like to say to professionals who may potentially be in the position to work with families suffering a SUDI/SIDS loss or any kind of infant loss?
• There is not a day that goes by that I do not want what should of been. Or think what could of been. I think an answer to SIDS is the only thing any parent who has lost a child of Sids really wants. So as to avoid such a tragic loss ever happening again to them or there loved ones. And as to take some of that blame from unanswered questions we all have in our hearts away
• Don't ever underestimate your role when encountering a family suffering such a tremendous loss. Be sure to let them feel your caring for their child. What happens in the first moments, hours, and days can set the stage for years of how these parents with cope with such a loss. Always give the opportunity for parents to be with their child one last time. Encourage organ donation in a gentle yet firm way. Don't be reluctant to tell parents what was done in attempt to revive the child. Let them feel that nothing went undone, every effort was made. Don't ever use cliche lines like "She's in a better place," or "She's not suffering". Identify with the parents how difficult this is, and how you are at a loss to know what to say before saying something along those lines.
• I think one of the things that hit us hardest was the realization that though our families and friends wanted to do nothing but try to help us heal, we were completely unable to communicate with people who had not been through the type of loss we had experienced. It is just such a powerful, horrible experience, and we for weeks found it impossible to talk to almost anyone. We didn't answer the phone, we didn't socialize, we just cocooned. That's just a part of why we think an active, current support network that is well-known and well-publicized to families in this situation is absolutely vital to the healing process. Whatever this group can do to help enhance and publicize this offering in the state of Vermont will be huge. I really think that if contact with a family who had been through this type of loss had been offered while we were still in the hospital, it could have made a huge difference in how alone we felt, and still feel one year later. It's a long process that many people think you should be "over" way sooner than you ever can be. That support network could be extremely healthy for all of us dealing with this type of loss.
• For the past several years, I have volunteered at a local bereavement camp hosted by the VNA and the Champlain Valley Junior League. I was incredibly lucky to have personal connections through this camp that I could call on for help. I contacted Ginny Frye, who leads the program at the camp, and she was kind enough to sit with my husband and me in those initial days. Through her, we found a wonderful yoga instructor who helps couples cope with grief. Through a friend at the VT Department of Health, I found the Roosas, who are so involved with the northeasternl VT infant loss support group. Through my acquaintances at the VNA, we found a grief counselor who specializes in infant death and a couple's counselor who continues to help us through this most challenging year. When just getting out of bed seems impossible, having the strength and presence of mind to research where to go for help would have been utterly impossible without the good fortune of these connections. I left the hospital with oodles of information from my insurance company, birthing class and FAHC about breast feeding, post-partum depression, baby health, etc. but not one resource to help me get through the most difficult situation of all - the loss of my baby.
• A tattered piece of paper I still carry with me lists all of those names and numbers I searched out. It's a short list - Vermont is a small community, after all. I truly hope that those in attendance fully support the work of the SIMON Project and that help is made more readily available to the grieving parents that come after me.
• Make contact; build a relationship with the parental survivors & family. Don't try to take the pain away - you can't. Don't try to compare any other type of death in your life to what they are experiencing unless you already have a relationship with them and your loss was very similar. Don't use a cold clinical form of response - be yourself, cry and show your own emotion - share in and experience the sadness of the event with people - companion with people & don't forget about dads, and surviving children and grandparents. Don't always ask a dad how his partner is doing until you allow him time to tell you how he is. . . Remember the baby's birthday and send a card, call or visit - and the death date - make regular contact for the first year.
• Hook up and make referrals with peoples' guidance and or permission - share resources with them - help them make connections with those who can help them through this for the long haul - not just short term intervention. Give them information they want - don't overload. Make sure you give them things to take care of themselves - New Beginnings (bereavement bags - an excellent example - ask Sara Nevins).
• In all our reading after the fact we learned a lot about SIDS and the common things that are seen. That it occurs often to premature babies, boy babies and babies in the winter (among other things), but these three all applied to our situation. I wish that these things had been pointed out to us to help make it feel a little less my fault. I think what professionals need to understand is that every parent feels to blame and that they will not be able to understand the depth of that blame or the pain. A parent needs to be told every reason why this was not their fault. Every parent wants the answer to WHY. Since there is no answer, we took a little solace in all the thoughts as to why that we read about. For that reason I think having information of all different kinds is so important. For the most part I think that doctors, etc may forget after a while that a loss occurred to a family, but it's important that they don't. My mid-wives were excellent with my subsequent pregnancies to acknowledge the baby that I had lost in infancy. However I'm not sure that my pediatrician does remember we lost a child. I think it's important for them to remember because I believe it influences the future of the siblings. It's also disheartening when reference is made to the number of brother/sisters - and the one that was lost is left out.
• Once you have mustered the courage to encounter me in my grief and offer me your support, remember that you cannot solve my pain and what's more, I do not ultimately wish for you to do so -- this pain is proportional to the significance of the child I mourn. If you are willing to be present with me in my anguish so that I do not have to endure it alone; if you can offer and guide me towards resources that will equip me with tools for surviving and reconstructing a future; if you can acknowledge and embrace my grieving that continues long after the rest of the world feels that I should be "over it"; if you can speak about my child when others avoid it for fear of hurting me; then you will have helped to strengthen me for the journey forward.

Compiled by Kathryn Roosa