As Maya came home from her heart surgery, we started April 2017 with relief and expectation. Expectation that with better weather we were likely to experience better health. I longed to stay out of hospitals, other than our standard check ups. We just wanted to enjoy our family at home. It was a wonderful thought.
We had a few weeks of just the beautiful chaos that is parenting four little people and then we found it: Amelie’s lump.
Time for change
In July I had decided that I wanted to move the lounge furniture around and David had disagreed, as he was concerned the babies could bump their head on the newly exposed radiator. I pushed ahead with my aesthetic hankerings and within half an hour Amelie had bumped her head on the newly exposed radiator. On this occasion Daddy knew best. However, sometimes things are supposed to happen. In attending a crying Amelie, I noticed a lump in her neck.
These photos had been taken shortly prior to us finding the lump. On looking at them again the lump seems so obvious.
Back to Hospital
We immediately took Amelie to Birmingham Children’s hospital. An ultrasound scan was arranged within days. We were relieved that things were moving fast. And then all four kids came down with horrendous chicken pox.
We weren’t able to take Amelie during the infectious period of the chicken pox and it was possibly the most nervous two weeks of my life as my brain mulled over the various scenarios as to what the lump could be and obviously landed on the worst possible one.
Finally we were able to have the initial scan and we were told that the lump appeared to be a second cleft branchial cyst and was most likely to be benign. This is a congenital condition that occurs in the early embryonic development. Our initial huge relief that it was likely to be benign was quickly replaced with worry as to what this condition meant for Amelie. We were referred to an Ear, Nose and Throat Consultant.
The Doctors advised that due to the lump’s position it was compromising her airway, so if she presented with stridor breathing we should call an ambulance immediately. This was terrifying advice because we had nearly lost Amelie in January when she had stopped breathing in my arms and was put into an induced coma.
There is also a risk that it is not possible to remove the whole lump and that it will grow back, meaning repeated surgery for children with this condition.
Following a consultation in the ENT clinic at BCH, we were told that the lump was growing faster than Amelie, and needed to be removed urgently.
Not only was it compromising her airway, but in time it would stop her from being able to eat and drink. In times gone past babies with this condition would have deteriorated through lack of nutrition and passed away.
MRI Scan – Second Cleft Branchial Cyst
The ENT consultant wanted Amelie to have an MRI scan in order to trace the lump entirely in preparation for its removal. It was at this point that we were informed by the consultant that whilst her suspicion is that the lump is a second cleft branchial cyst due to its presentation with a sinus, that there were other possibilities. This upset me as prior to this advice I thought there was only one diagnosis. I also thought it was a surety that the lump was benign. Of course I did google doc – why, oh why!?! The other possibilities were like a punch in the stomach, particularly as I saw the word tracheotomy. However, the most important thing was/is to know that the lump is benign.
Amelie needed to have a general anaesthetic for the MRI scan. I found this terribly upsetting. It’s never pleasant for anyone to have a GA, but the last time she had one was when she had been put into an induced coma in January. As such it was very triggering for me and my PTSD. I really struggle with anything that will cause discomfort or risk to any of my babies.
The Day of Surgery
Having now spent so much time in hospitals, I was once again incredibly impressed with the NHS. We arrived to the ‘Play and Admission’ department.
Rather than sit in a ward whilst we waited for Amelie to have her surgery, we spent most of the day in a play centre. Children and their carers can sit comfortably in a playful environment. Amelie spent hours in the sensory room that kept her wonderfully occupied, which made the waiting so much easier for us knowing that she was happy. It was also a treat for us all to have lots of 1-1 time.
We tried to take a last picture of her lump. The Consultant had marked her neck ready for surgery and she looked like she had an anchor tattoo, which made us smile: our own little Popeye.
The Question I’d been waiting to ask
When we met the consultant prior to surgery, I asked the question that I’ve been pondering ever since we found this lump. Could it have caused Amelie to stop breathing in January? The consultant answered yes. Due to its proximity to her airway, if she lies in a particular position it could put too much pressure on her airway. I wish she had said no. This is why Amelie needed the lump removing urgently. Amelie also had a sinus which would leak and could become infected.
A Ticking Time Bomb
The consultants answer meant that the episode in January could have happened again. It didn’t, and now the lump has been removed, so we can look forward, but it’s a thought that at times will haunt me.
The Consultant has also advised us that she can’t be sure that the lump is benign until a biopsy is done on it. We will find out the results around two weeks after the operation. Though due to its clinical presentation, the consultant is as confident as she can be that it is a benign second cleft branchial cyst. As a parent the question mark means we will not rest until the outcome is known.
It is not until after the event that you realise the impact a pending surgery and/or health concern has.
The risk to Amelie’s breathing as we approached surgery was certainly a huge concern, but all the unknowns weigh down on you. We’d been told she would most likely need a neck drain after the operation; that it may not be possible to remove the whole lump; that it’s not possible to know if it’s benign until a biopsy is done. You worry how she will be after the operation: will she be in too much pain? Will she try and rip the neck drain out? Can the operation be completed safely without hitting any of the nerves that are at risk in this delicate area? Will it be safe to remove the whole lump? How long will she have to stay in hospital? How scarred will she be?
The Trauma of Hospital Life
It’s also the things that you see in hospital that can create dark clouds. Over the months spent in hospital, I have seen some extremely sad things and heard compelling stories of health trauma and survival. Things that I never knew about or had thought about before. The outcome of this is that I appreciate in a way I didn’t before. As such I embrace our experiences, though I would prefer not to have lived them for my babies benefit.
This hospital stay we were in the burns centre in the struggle to find Amelie a bed space. As the nurse came to find us to go and collect Amelie from theatre after her surgery, David had stepped out to make a phone call. The nurse asked for a description of him, and commented that she had mistakenly thought he was a police officer as the ward was expecting the police and social services to attend.
As time passed it was clear that the family opposite were the subject of the attention. To observe their child’s pain due to the severe burns to their entire body, was extremely upsetting. There was something I found more upsetting, and that was the way both parents behaved to each other, the staff and incredibly their poor child, at one point the father referring to the child as a ‘little shit’. Just too upsetting.
A lovely family next to us were with their baby for the ninth surgery in less than a year. The baby would require further surgery in the future.
If seeing these things doesn’t make you grateful for all that you have, then what will? Inevitably, observing the things you see in hospital can make you feel sad.
My babies continue to amaze me. Having spent too much time in hospitals, we know that babies can decline very quickly: unfortunately, we have experienced that firsthand. However, they can bounce back from ill health or surgery as quickly as they can decline.
Amelie is incredible. I couldn’t be prouder of how resilient she has been in the countdown to surgery and the immediate aftermath. She cried some tears of confusion as she came out of the anaesthetic, and then she sat up and started to play.
In the days after the surgery, it’s almost as if David and I are coming out of our own anaesthetic as the rain clouds lift and the rainbows shine through. I can physically feel the stress lifting. We also feel exhausted. The housework can wait.
I feel so reassured by the surgeons confidence that she has removed the whole lump, so the operation couldn’t have gone any better. My relief was enormous when I realised that Amelie did not require a neck drain following surgery, which hugely aided her recovery. I was so happy that she was able to come home the following day. I take comfort in the Consultant’s assured clinical diagnosis that the lump appears to be a second cleft branchial cyst and feel that we can take tentative steps forward to a period of good health whilst we await the biopsy results.
As a parent to a premature and/or a poorly baby, you worry that they have experienced too much in their short lives. I remember a nurse commenting on how brave my babies were on both of the occasions that they had their immunisation injections, saying: “I can’t believe how good they are. Mind you, they’re used to pain aren’t they”. She meant no harm, but her comment stabbed at my heart.
Amelie has bounced back from this surgery and has been so resilient. It does cross my mind as to whether it’s due to her beginning of life. Living in NICU for near on 3 months with all that entails, and her later admission to intensive care.
If this is true then I guess I can learn a wonderful lesson from my babies. That the tough times don’t have to break you, they can make you stronger. If she is stronger now, then she’s benefiting now. I wish so dearly that she didn’t have to have experienced her time in hospitals, but she did. I can’t change it now, I couldn’t change it then. We are where we are.
Learning I’m Not to Blame
In saying that, I realise the huge step forward I have taken. I felt hugely guilty for a long time that I hadn’t been able to keep my girls safe inside me for longer. Even so, the rational part of me knew I couldn’t change their arrival at 29 weeks. The thought of their prematurity and it’s consequences would have me in floods of tears in an instant. No matter how many people told me it wasn’t my fault, as their mother I would always feel responsible. Now I understand that I couldn’t have done anything differently, it just happened – I wish it hadn’t. A little part of me will always feel guilty, but the rational voice is a little louder these days.
We are fortunate to have the NHS to provide the life saving care that Amelie, her sisters and I have received. It could have been so different.
Amelie is who she is because of the character she has built through her experiences. And that’s ok. Amelie would be entirely entitled to be a diva: she’s not, Amelie is a super hero.
Biopsy Results – Additional Comment
On the 29th January, we received a call from Amelie’s Consultant. We heard the news we were waiting to hear. Amelie’s lump is benign. In the Consultant’s words “There are no nasty’s within or around the lump, it is a second cleft branchial cyst. So, I hope this is the end of the story”. We hope it is the end of the story too.