As a parent, finding out that your unborn or newborn child has a disability or a difference can be incredibly frightening. Even without the myriad of other complications that can be suspected with any kind of in utero anomaly, it is quite alarming enough by itself.
When doctors first discovered Hero’s limb difference at our 20-week anomaly scan, we were catapulted from a blissfully uncomplicated midwife-led pregnancy to suddenly being referred to a multitude of different consultants, across two different hospitals. In the first weeks after that scan we were told that Hero might not be compatible with life, and if she was, there was a chance that she would be severely disabled and have a limited life. We were told that termination before the 24-week cut off point might well be preferable. Happily for us, that turned out to not be the case. And we count our many blessings for that every single day.
During that frightening time we, as hopeful and terrified parents to be, had absolutely no room to be worrying about anything or anyone else. Particularly for those early days, we couldn’t see much outside of our own little bubble of uncertainty. I don’t think I truly emerged from it until Hero was months old. It was only really when she started crawling and using her little hand for every thing, that I at last truly believed that she would be perfectly ok.
Since then, with my head finally out of the clouds, I have started thinking back to how that time must have been for other people. A family often extends well beyond simply the parents, after all. We have sisters and brothers, aunts and uncles and grandparents, all of who went through this experience with us.
Perhaps in many cases the closest extended family members to the metaphorical ‘front line’ are the new child’s grandparents. They not only have the infant’s best interests at heart, but they also have their own children to support. Nowadays it can often be the grandparents who are out there on the internet and doing the research when a diagnosis is received. It can often be grandparents who are reaching out to charities such as Reach in the UK and the USA-based Lucky Fin Project. As more and more grandparents turn to the internet for answers (answers that won’t always be found), we at Though She Be But Little believe that it could make all the difference if grandparents are able to find information for themselves as well as validation for their experiences and feelings.
I’ve had a number of grandparents of children with a difference like Hero’s reaching out to us here at Though She Be But Little. It got me thinking about what the whole experience must be like through the eyes of a parent of a parent. When we turned to the internet there was lots of information geared at parents; at the time there never seemed to be enough, but it was there. If you visit the Reach website there’s a wealth of information devoted to parents at every stage of their child’s journey. It’s an absolutely wonderful resource and if you haven’t checked it out already, I implore you to do so!
The Circle of Grief Theory
According to the Circle of Grief Theory, in difficult times emotional support needs to be paid inwards towards the person most affected by the events. In this situation, the baby is everybody’s focus; however, it’s the parents who are at the centre of the circle. In most cases, the baby has no idea that anything is even amiss after all. The parents’ only priority during a challenging time like this should be to care for the baby and for themselves. But where then do grandparents turn, if they are on the next ring out? When their child is going through such a difficult time, who can they turn to?
As my curiosity grew about what our experience had been like for those in a wider circle than me, I turned to my own parents and to my husband’s. For the first time I asked them what it had been like looking on as we had received that news. Alongside them, I interviewed a number of grandparents from Reach and Lucky Fin families to find out how the experience had been for them.
“We were very upset, not necessarily about the hand but I didn’t want my daughter to go through that. It’s stressful enough having a baby without the added stress and upset of dealing with the unknown. Missing a hand is one thing but there was also no guarantee that everything else would be all right. It just wasn’t fair.” – Paul, UK
It was about us as parents, not grandparents
“My initial reaction was to comfort my daughter but I just couldn’t believe it. At first I was thinking it was all probably a mistake.” – M, UK
One of the most common things grandparents said to me was how they were worried and upset, not only for the baby, but for their children too. As parents all we have to worry about is our baby, and ourselves. For grandparents they’re not only concerned for the baby, they’re concerned for their own babies too, creating a real double layer of worry and grief.
“My first reaction was shock, I kept thinking about my daughter and how she was feeling. I was worried about telling my own mum and other family members, I was worried about their reactions.” – Muriel, UK
“It wasn’t really about us as grandparents, it was about us as parents.” – Paul, UK
Input from the experts
“I remember my sister saying she’d nearly bought a card with words saying; “10 little fingers and 10 little toes”. I felt sad thinking about that. It’s only a little thing, I know, but hits you hard.” – Muriel, UK
Being far from an expert in these things, I reached out to an NHS specialist who deals with families in these situations every day. The specialist told me that, for grandparents, the need to support their own children could cause a real fear of saying or doing the wrong thing when a difficult situation arises.
“Many grandparents tell me that they didn’t know what to say [to their child]. They were frightened of saying the wrong thing, or even of being too positive if their child wasn’t ready to hear that yet,” she told Though She Be But Little. “Sometimes they just don’t know how to approach the topic or to start the conversation. There’s a very real fear of just getting it wrong.”
(Keep an eye out for ‘A grandparent’s guide to limb difference: Part 2’ for some superb tips from parents and professionals on how to open the conversation and much more. Coming soon to Though She Be But Little!)
On top of this apprehension about supporting someone you love through a completely uncharted situation, grandparents also need to process their own very real responses and emotions to the news that their grandchild is different. The aim of this project, in part, was to offer some much needed validation and acknowledgement that the experience can be emotionally demanding and frightening for grandparents too, although often these feelings can be lost amongst the need for immediate action and support of others around them.
“I was distressed when we heard the news of my daughter’s scan. Looking back the shock wasn’t just about the hand, it was the deep fear that there was worse to come.” – Carmen, UK
We didn’t know [about her difference] until she was born; my wife came back into the room where myself and the father were at, crying hysterically. She didn’t know how to react after finding out that [our granddaughter] was missing part of her right arm. I thought that she or my daughter hadn’t survived. – David, USA
Our darkest fears
“I was worried about how he would be able to cope and how other people would react to him,” – M, UK
The initial fears and responses of the grandparents I spoke to were so similar to my own painful worries as a parent. How would Hero cope? Would she be bullied? Am I able to give her what she needs?
One of the deepest and darkest fears during my pregnancy was that I would somehow be horrified by the look of her little hand when she was born. It was something I didn’t feel comfortable admitting back then. We went so far as to have a 3D scan to try and see her hand while she was still in the womb. Throughout the whole scan she kept that arm hidden behind her head and out of sight. With hindsight I’m able to look back and think that it was hidden for a reason. It was hidden from sight because absolutely nothing about my daughter’s appearance could ever upset me, only I didn’t know that back then. It’s not just parents who have these fears and concerns. For grandparents too that sense of facing something, that in many cases is completely unfamiliar and unknown, can be just as daunting as it is for the parents. We simply don’t know how we will react when confronted with something so new and unexpected.
“In these situations people can be grieving for the ‘perfect child’”, our specialist told us. “There’s a worry about attachment and questions of ‘will I bond with my grandchild?’”
“I was worried I would be ashamed of my reaction. But as soon as I saw her and I saw her hand I wasn’t the least bit shocked. It’s changed my whole view of perfect now; I’ve seen that things can be totally perfect even if they’re not,” – Carmen, UK
Every day: Amazing!
Fears about how the child will cope going through life with a difference that will not only affect their their sense of fitting in, but also their physical ability as well, are of course the prevailing concern. It’s very difficult, having grown up with two hands, to imagine how something could possibly be achieved with just five fingers, or sometimes even fewer.
“I am still worried about the operations she will have in the future. But I worry less about people and their reactions now; I just love her for who she is and the joy she gives me,” – Muriel, UK
And yet, despite these very real fears and concerns, almost every grandparent we spoke to said that, while they still worry from time to time, their grandchild has grown up to amaze them every day. Fears are being defied and expectations are being changed. These kids are wonderful, and talented and able. This genuine outpouring of pride and love, I hope, will go someway towards reassuring grandparents who are new to the limb different journey. The future might seem bleak at first, but it’s bright and wonderful and every day these kids are amazing!
“Yes, we do still worry about her, but we can see that she is coping very well. She has a lot of good people around her and has had a lot of support from Great Ormond Street and Reach,” – Kim, UK
“We were baffled like all new parents or grandparents when she was born as to what she would need, how we could help, where would we turn for help or guidance. It was a bit scary at first but then, to watch her grow, get older and develop, we knew she would be just fine with our assistance and the wonderful world around her!” – David, USA
“He’s coping so well because he’s never known any different!” – M, UK
Are you a Lucky Fin grandparent?
You can use the comments section to share your experiences around the birth of your grandchild. We are stronger together!
I would like to extend a huge thank you to all of the families who took part in the interviews and shared their personal and heartwarming stories. Thanks also to Molly from the Lucky Fin Project and the Reach community. I would also like to thank our specialist contributor, who works so hard every day to change lives for the better, yet who still found time to talk with me for hours about the wonderful grandparents she works with.
This article is Part 1 in a two part series.
Part 2 will explore the vital role that grandparents play in supporting their children and their grandchildren born with a limb difference. We will have expert advice from our professional and hear from parents about the things their parents did that made all the difference. You can check our Part 2 here!
📷 Credit for the beautiful cover photo goes to Amy-Jane Evans and Poppy – thank you for sharing the love! ❤️
Here are our baby photo stars, Ryan, Hero, Blakelee and Isabelle as they are today: Utterly fintastic!