Recently I hosted a #BabyLossHour with guest, Kate Pinney, a Tommys Midwife and Health Visitor. I invited Kate alone as the Health Visitor voice is one we don’t really hear from in regards to baby loss and I wanted to explore that a little more. As always, whenever after care is discussed – it was a popular discussion. This is mostly because, sadly, the care element is often very lacking and people are keen to talk about that and what needs to improve.
The scope of the conversation went wider than just Health Visitor – it ventured into all of those who have contact with bereaved parents following the loss of a baby, whether that be during or after pregnancy. It was powerful. For so many reasons. So I wanted to compile the anecdotes shared as a resource here. This isn’t a how to list for caring for bereaved parents – it’s an opportunity to reflect on the care that is already being provided. A food for thought resource for those who could, at any time, come into contact with the bereaved. If you’d like to read the full transcript, you can access it here.
If you work in community health care, in whichever role, or work in maternity and neonatal services, I’d like to invite you to ask to reflect on some of the examples of care below. I’m not going to prioritise or order these examples or state whether I think that they are good or bad, I’d just like people to read them, and consider the below questions.
Is this acceptable care? If not, could this happen in my trust? If so, what can I do to prevent this from happening or to improve care? If it is acceptable, how can I make sure that it’s delivered consistently to bereaved parents?
Please do get in touch to share your thoughts.
“We never heard from our HVs after Leo died, but had great support antenatally and postnatally from the same group of HVs for Eli. They commented at that point that they were aware of Leo dying, but procedure is just to discharge as they hadn’t made contact at that point.“
“Health Visitor visited me about two weeks after losing Georgie and Hattie. The HV was lovely but I really feel that she just didn’t know what to say at all. It felt like myself and my husband were leading the conversation which was very difficult.… I think it was very difficult. I was lucky to have had three visits from a midwife at home. I felt seeing a HV as well as this was unnecessary and upsetting, having to go through everything again with someone else was very very painful.“
“I don’t remember even hearing from a HV, my local midwife came to visit me a week after and signed me off as “tearful but surrounded by supporting family and friends” which I was in the first couple of weeks“
“Carys was on neonatal units for 8 weeks before she died and I heard nothing from the HV until after she died, when I just got a letter to say sorry for my loss and to ring her if I needed her… “
“My daughter lived for 6 weeks in the NICU. I was aware the HV was contacting the NICU to ask for progress but they never contacted me personally. I had plenty of postnatal checks in the hospital as we were staying in the NICU but nothing once I got home…. Guess the thought was there by actually contacting me after she died but it would have been nice to have met them before whilst Carys was on units“
“I didn’t have any health visitor support after Alfie died. I don’t think I heard the phrase ‘health visitor’ mentioned at any point during pregnancy or afterwards.“
“I never spoke to a health visitor. We lost at 16 weeks so the only professionals who supported were the bereavement midwives at the unit and my GP. The midwives stayed in touch for a good month or so and one performed a home visit. They are much appreciated.“
“We didn’t have any contact from the HV following Austin’s death but I’m not sure what they could of offered us.”
“Yeah I do (think that HV support would have been valuable even though I had not yet met them) because once I did meet her, she was probably one of the most compassionate & generous people within our community team. We really needed an advocate after Leo died. Our Bereavement Midwife unfortunately didn’t do that for us.“
“I was 5 days post c section after my stillbirth when someone turned up unannounced – she said I seemed well “considering” and would I mind if she came back with a student in a few days as it would be good for them to witness first hand.”
“No letter for us. We transferred to a hospice before Florence died and have had lots of support from them but seem to have fallen off NHS radar. No bereavement midwife or invite to memorial services (found out about those through other mum’s at SANDS group)“
“When Theo died kate was poorly in hospital for a week after as she suffered from Pre-Eclampsia, the care kate had when she got home was very good, we asked for her midwife that she had while pregnant with Theo to handle us, we are very fortunate to have the the support of the amazing two women that are Northampton General’s Bereavement Midwives, I never even knew such a role existed. They helped us with death certs and birth cert, funeral and still to this day we speak to them 4 years later.”
“Similarly, we weren’t told about the hospital memorial service; it luckily happened that I chatted to the b.midwife a few days before. Apparently they don’t invite in the immediate few weeks, but I feel that’s such an important time for support and remembrance.“
“Unfortunately we never saw the same HV twice with our older child so I think I’d of been wary of having to go over everything time and time again with someone new each visit. Maybe if we’d of been given a point of contact when pregnant I may of felt differently.”
“I didn’t getpostnatal checks in the hospital once I was discharged, apparently the HV was checking in whilst C was in NICU. I was told they only normally get involved once you are ready to transition home but not that helpful if you don’t make it home with baby.”
“This is why I was glad we got a visit from one of the bereavement midwives. We had built a relationship of trust and comfort with her and I was happy to have her in my home. Even just to be able to make her a drink for a change…“
“Our HV was really REALLY great. I couldn’t speak more highly of them. We lost a twin so they went above and beyond to do anything they could to help us with our surviving baby, who was eight weeks prem… Our HV spent a lot of time at our house to do weigh ins and checks for our baby and spent time to ask after our wellbeing / how I was feeling / coping and always stayed for a chat.“
“Thinking back now the MW may have asked about sending the HV & I declined as I didn’t see the point without having a baby at home. Maybe a follow up would have been a good idea though , a week in to baby loss & I barely knew my own name never mind what I needed.”
“My health visitor has gone above and beyond throughout our whole journey. I have a surviving twin so in a slightly different situation. She rings me personally and often builds time in to come and just chat.… Made such a difference. I wasn’t honestly expecting much as our HV team with our first wasn’t much help and I had PND etc. They weren’t very knowledgeable and I didn’t feel trusting. This time – so diff.“
“Our community midwife was absolutely amazing, we were very fortunate to have her in our lives at that time I’m not sure how we could of got through that first month without her to be honest.”
“I was grateful for anyone who would sit in my living room and just listen”
“The bereavement midwives have been phenomenal. They guided us through memory-making, arranged the logistics of his funeral, and are an inside track to doctors at the hospital as we deal with the post-mortem.“
“Have not had any contact from a HV since losing my baby in December. Only had midwife and GP follow up because I contacted them several weeks later.“
“I was very grateful & still am for our community MW just coming round and wanting to learn about Leo (and the chocolates she gave us!). I think we saw her twice but within a week, we were left. I think extending would be helpful, to just have someone if needed.”
“We received a call from midwife & that was it. Having my other two girls I know how good the postnatal care was. So leaves me shocked at the lack of care after losing Aria. We have lots of support around us but couldn’t help thinking some people don’t.”
“Its at the point that you don’t hear back from the hospital, spend days chasing post mortems, and have constant questions – thats when you need a point of contact. For us, the BM should have been it, but it wasn’t.”
“We had one phone call from the bereavement midwife a week after Isaiah died and at that point we weren’t ready for the support. We have had no bereavement care from anywhere except what we have sourced ourselves eg counselling I am really concerned for people in this situation that don’t have family, friends, partners etc to help them when the follow up care is non-existent. There are some dark places reached in grief that need essential support to work through.”
“The bereavement midwife has been my main contact. I fell through the cracks due to a transfer to NICU at a different Hospital it seems. I can’t possibly have been the first.”
“No health visiting support for me as I lost my baby at what should have been 12 weeks. An extremely rude and unhelpful GP too. Luckily I found charity support.”
“I expected to hear from our HV after Kaitlyn died as we have an older daughter and I thought they would want to support us as a family unit. I was surprised when we discharged and I haven’t heard from HVs at all since.“
“Rarely get a chance to see my GP! It (six week check) was with my nurse, she’s lovely but she had no clue that Luna was stillborn. When I entered the room she was surprised to see me “has it been 6 weeks already?” It had been 8. After some awkwardness she finally looked at my notes… Then after realising that Luna was stillborn at 35 weeks the appointment went quite cold and clinical. Recently she took “IUD at 35 weeks” off my notes and she confused it with IUD contraception instead of IntraUterine Death“
“I think this is were we became a bit lost too, we had a day in NICU so we weren’t in our hospitals butterfly suite when Elsie passed. Although the nurses were so lovely, after hearing other’s experiences in Butterfly Suite I can see a lot of difference.”
“Our HV for Eli knew our history and absolutely gave every support with that in mind. It was really helpful, because we had a huge team in pregnancy, and that ends when you finally get home.”
“I would offered listening visit(s), so will come and visit at home and talk and listen, also to discuss and signpost any services that may be helpful, particularly in the long term. Even if its a year after parents have lost their baby, it would never be too late” – from a Health Visitor
“We didn’t have a BM but our @121Midwives haven’t left our sides, they’re part of our family now. I couldn’t have done it without them“
“Our health visitor called me regularly for the 8 weeks Kieran was in NICU and I had two home visits after he came home. Knowing our history and that he was our rainbow I think the second visit was more to check in on my mental health.”
“Mine (six week check) went “I don’t know what you want me to do without a baby” – beyond shocking. We went back after a m/c and was told to return to work to rediscover joy.“
“My health visitor texted me the day I registered my sons death congratulating me and arranging a day to visit. It broke me even more than before. Thankfully my bereavement midwife took over communications after that.”
“No HV, no bereavement midwife, no anyone… no one cared. just days of crying a week of wondering I guess this is it and back to work within 2 weeks. 3 months later had to take time off with mental health.“
“We are cared for by a fantastic NICU nurse who visits us, I was offered my info to be passed on to HVs when we knew we were going to lose baby but I declined, it’s just another new face I would have had to start from the beginning with.”
“Help is needed before you hit the time it’s needed urgently. I remember calling our self refer counselling, after a 10 min Q&A that I needed to spot in due to crying, I was told “you can have online support but you’re not sad enough for face to face”“
“I think there is definitely a gap here. I’ve had follow up from the NICU with regards to Isaiah’s care and will meet to discuss PM results. But nothing from the hospital related to bereavement care and my community midwife only knew he’d died when I contacted her.”
“We had two very bad experiences at the GP – first the Dr offered Kate anti-depressants before asking her name practically, second trip after Theo, she read preeclampsia and said “are you pregnant?” At that point I told her to read her bloody notes fully!”
“I received a counselling leaflet in hospital pack. I didn’t ring straight away but eventually did a few months later. A six – eight week wait. Found it useful and I think waiting also helped. I think straight away may have been too soon. No one size fits all though.”
“I did wonder about whether alerts would be helpful. When I go in there’s always alerts saying things are overdue like my asthma review so why not alert to say my baby died so they don’t ask awful questions.”“I once had a call from reception at my GPs to book in some bloods she said “I can see you have a young baby so I suppose early might not be good”What does it say in my notes that shows I had a baby and not that he died!?”
I hope the above has provided useful food for thought and that it turns into action to improve the consistent delivery of good care for bereaved parents. Please do share your thoughts.
Should you wish to understand their needs more, #BabyLossHour happens every Tuesday from 8pm on Twitter and everyone is always welcome.
The Legacy of Leo 