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A world beyond his mother’s lap

This Christmas season will be particularly special for Shagufta, her husband, Derek, and their three boys. It was just before last Christmas when doctors explained to Shagufta that that if her youngest son, Raheem, continued to show low albumin levels, he would be assessed for liver transplant. From then on, the thought of transplant was never far from her mind and the months that followed have been very tough. Shagufta tells her story here:

Raheem was born on July 1 2021. All seemed well and we were home after two days. It was when he was three days old, when the midwife visited, that she pointed out that he looked very jaundiced. This was the first time I had noticed it. The midwife informed me what I should be looking out for and what symptoms would require medical attention. The following day I started to get concerned that Raheem was not his normal self. He seemed very lethargic so I took him to A&E as per the midwife’s advice. I was left in shock. Raheem was diagnosed with a heart condition and subsequently a rare chromosome deletion which meant he would have developmental delays and learning difficulties. It was very hard to take in.

When he was two weeks old, Raheem was diagnosed with prolonged jaundice and had bloods taken to determine the cause. I was very scared of what my baby’s diagnosis would be and how would it impact his quality of life. I hadn’t had the opportunity to enjoy my newborn baby as I was left traumatised by the other diagnoses. It was all too much for me and I just couldn’t bring myself to be there with Raheem as I struggled with my emotions when he cried as the doctors were taking bloods from him.

My husband stepped up at that time and I took care of my elder two boys, Shimmy who is now eight, and Kameel who is now five. I was missing Raheem when I was away from him, though, and I felt guilty for not being there for him when he needed me the most. In the end my guilt outweighed my fears, so I returned to the hospital to be there with Raheem.

Facing my fears

For me this was the beginning of putting my emotions to the side whilst I dealt with the situation at hand. In the early days I would leave Raheem with the paediatrician and nurse each time he was to have a blood test or a cannula put in but I realised that, although me being by his side wouldn’t stop him from crying, knowing I was there would give him some comfort. We were in this together! His pain was my pain so we could suffer together and I must not run!

Raheem was in our local hospital for two weeks while they liaised with Birmingham Children’s Hospital (BCH) regarding his assessments. After that, the plan was for him to have blood tests every week to monitor his bilirubin levels as BCH suspected he had biliary atresia. Unfortunately, he often ended up having bloods twice on the same day, as they would have to be repeated following issues with clotting etc. Sometimes it would be midnight before we would leave hospital at midnight following confirmation that the bloods were adequate.

After three weeks, his bilirubin levels were still high so Raheem was admitted to Birmingham  for further investigations. At this point doctors confirmed that he had biliary atresia and they would need to perform a Kasai procedure. The Liver team were very accommodating in simplifying information for us to process and they worked at our pace in providing the information we need to know. We had hoped that the Kasai would work and give him a better quality of life but unfortunately his bilirubin levels remained high and we still had to visit the local hospital at least every other week for bloods whilst visiting his liver consultant every month. We did feel reassured that Raheem was being closely monitored.

A downside of all this medical intervention was that Raheem would not trust anyone as he thought they would hurt him. It even took him six months to trust his dad. Otherwise I was his only comforter, his safety net. He wouldn’t let anyone other than me or his dad pick him up.

When Raheem was discharged following his Kasai, I was initially extremely nervous and doubted that I could look after him but there is something amazing in nature that, as mothers, we have the ability to accommodate our baby’s needs and I was actually able to look after him. However, he was extremely unsettled, he was in my arms all the time and I would be rocking him, swinging him in my arms doing anything to comfort him, I was on autopilot mode. I was exhausted and had no quality of life as my only focus in life at that point was to comfort Raheem the best I could.

Isolation

I reached out for help from our health visitor and others but all efforts for getting help failed and I had no support from my family or friends. I felt very isolated  – I had an ill child and no one understood what I was going through and how my life had changed. I felt so bitter towards my family and friends because they didn’t step up to offer me help in any way. I realise now that I didn’t ask for help because I felt too proud or thought I might cause inconvenience to their lives or would get upset if they said no. People would say ‘if you need anything let me know’ . That isn’t useful. It’s vague. What are your limitations and abilities? People need to have better conversations with those needing help. They need to look at what the person is struggling with and take the conversation from there.

At this time I was a month away from completing my Level 3 qualifications in Counselling but had to quit as at the time the hospital admissions were excessive and I couldn’t commit to the course. I also quit my job. Caring for a poorly baby was a demanding job were I wasn’t allowed a loo break or time out due to his excessive needs for comfort.

All I needed was a small break from Raheem. The constant whining became overwhelming, even though I knew it was his way of letting me know how distressed he was. I was told by my local hospital that I must not give him paracetamol as that is bad for his liver so I let him soldier through his pains. My arm, shoulder and back were in excessive pain from carrying, rocking and swaying him and because his sleep was disturbed, so was mine and I was not able to function properly.

Shagufta felt worn out and isolated

My elder two children didn’t have a proactive mum in their lives as I was too busy with Raheem that the best I could do was keep them in front of me so that I could supervise them and feed them which was mostly always later when Raheem was least distressed. When he napped in the day I would constantly tell the other two off for making any noise as this was my break from Raheem and I needed to recharge before I had to start again. I felt so bad for my elder two as they were not doing anything out of line, they were only little themselves. I felt so upset that no one could see that this was a concern and would rather leave me to deal with this situation alone, whilst my husband was at work.

When my husband came home he would tackle the sink full of dishes from the day, tidy around the house (as the elder boys would make a mess and I had no strength to discipline them) and make dinner. Therefore, I still got no break from Raheem when my husband was at home. Shimmy, my eldest, started making remarks like ‘you don’t care about us, all you care about is Raheem’. Kameel would miss me immensely when I was staying in hospital with Raheem for weeks. Both kids would argue about which parent should be at hospital. I remember Kameel pointing out that ‘mummy is always in hospital with Raheem’ and that hurt.

CLDF

In January 2022, Raheem caught chickenpox from his elder brothers and became more needy to the point he wouldn’t let me put him down even when he was in deep sleep. I had to therefore keep him on me whilst I fell asleep. I know my role is to comfort and be there for my child but this was extremely excessive and there was no one who could take over. I realised I really had to take action. I’d learnt about CLDF from the leaflets which had been provided at BCH. So I called them for some advice. At that point, I felt so isolated from the world and felt like no-one really understood, but speaking to Kate, the family support worker, was so amazing. She not only understood, she also spoke my language. I received great empathy from her and finally felt heard.

Kate helped where she could. First she suggested a grant for an item that would help me to look after Raheem better and also a family break which we will all really benefit from.  I wish that I had known about the CLDF much earlier. I think local hospitals should introduce parents to CLDF when liver disease is suspected so that parents can benefit from this, even as a source of knowledge.

Raheem had his transplant assessment in March 2022 and was placed on the transplant list in April. Although the thought of a huge operation was daunting, I knew this was the best thing for my son. I had witnessed his health deteriorating daily and saw how much discomfort he was in. I wanted him to have the opportunity to live a normal life and only a transplant would offer him this opportunity to discover a world beyond his mother’s lap.

Three times we thought we had a match but the transplant didn’t go ahead for different reasons. Each time, after a rollercoaster of emotions we were left upset. It became extremely frustrating to attend the monthly review at BCH with the liver consultant, as that meant Raheem hadn’t been transplanted. I began to worry that a suitable donor would never be found and I considered becoming a living donor but this was not possible as I didn’t meet the criteria in terms of health and I needed to be well to take care of Raheem.

In October 2022, after six months of being on the transplant list and three failed attempts,  we received the call from the transplant coordinator. I tried not to raise my hopes as we had been disappointed so many times before, so when we got to hospital and the surgical staff walked in to the room telling us it was time, I was confused and responded ‘time for what?’ When I was told they were here to take him to theatre I was overwhelmed with emotions but what was at the forefront of all was that my baby is finally not going to be in pain and will be able to play with his brothers. Happily the transplant was a success. The liver team at Birmingham are just amazing and so are the staff at PICU who looked after us, our emotions and Raheem’s medical needs.

Shagufta holds Raheem for the first time after his transplant

Our life today

We are now hoping to move on to a better life and are waiting for the season to change so that we can compensate for all the missed quality family time and I no longer have to keep Raheem home whilst my husband witnesses the elder kids’ special moments alone.

Prior to his transplant, Raheem was behind on his development, gross motoring skills in particular, but now he is making real progress in this area. He has a lot of catching up to do but I know he will get there now that he is better in himself. I always thought Raheem was behind on his development because of his chromosome disorder but it turned out it was his liver condition holding him back. I know this  isn’t the end of his journey with biliary atresia but things are looking so much better. He is much more engaging and has developed a very cheeky personality! The transplant was life-changing and the great thing is that he doesn’t remember any of it!

Raheem is currently having weekly bloods to measure his tacrolimus levels which are fluctuating and he has had three hospital admissions but not for anything as serious as pre-transplant. We know that he is being very closely monitored by BCH and our local hospital are helpful and precautious. I am much more positive than I was last year, partly because I have come to terms with the hospital being our second home for life, although this is becoming less so,  post-transplant. I have experience in handling situations from assisting nurses in doing Raheem’s obs to doing anything to help keep him calm rather than running away from the situation. I have even found myself in situations where I am educating a group of first year trainee doctors on biliary atresia and working medical machines, having them prepared for the nurses. This is my world and I call myself a parent nurse.

What I’ve learned

The past 18 months have been a huge journey for me so far and it hasn’t been easy. What helps is having a good support system around you because the demand for you is so high you will need a supportive partner/ family who can take over for a bit or even having someone to talk to. I know there are people out there like me who shy away from asking for help. You need to take matters into your hands and find organisations that can help you in your local area as well. It will really help you to find people who are from a similar world to yours. It’s easy to say but you need to look after yourself because you need to look after your little trooper! Investing in yourself is indirectly investing in your poorly child and they pick up your energy. 

 Try speaking to other parents on the liver ward or on the wards in local hospitals as sharing experiences is very helpful. You will not only be a small part of other people’s journey but you will gain some strength from learning different challenges people go through and how they deal with their challenges. You will also give others strength and know that there are people in worse of situations than you and be grateful that you are able to manage the challenges given to you.

Raheem with his dad, Derek and brothers Kameel (left) and Shimmy

My heart goes out to those parents I see at the Liver ward with their newborn babies because I know it’s a very heartbreaking situation to be in but I also know that in time you will become immune to everything because there is no other option. I had severe medical anxiety my whole life. I even avoided blood tests until I got pregnant at the age of 25. I saw my son’s condition as living my worst nightmare. Now I know it’s a part of his lifelong journey. It is no longer about us and our feelings. You will be faced with a lot of situations you may not like but will have to go ahead with because it is for your child’s benefit. I was extremely upset when I found out that my son would need an NG tube and struggled to feed him that way. I wouldn’t look at my son’s bandage post Kasai for the first month, my husband had to bath him and change his clothes. But I found myself staring right at my son’s wound post-transplant, I wasn’t fazed. It’s a growth cycle for us parents. I wish you all the best on your journey with your little ones and I hope to cross paths with you one day. 

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