A Letter to Liyana
You were born in 2021 on Monday 28th June at 4.24 PM in Heartlands Hospital, weighing 8.2 Ibs. We welcomed you into the world two weeks early. We'd love to think this is because you were as excited to meet us as we were to meet you. We sadly knew that your time with us would be short. despite this you were born strong, defying the odds, our amazing Liyana. It was during my pregnancy at the 20-week scan that we started to know that things weren't quite right. Your cerebellum was small, and your kidneys were showing some problems too. Our hearts sank for our little one, but we kept positive as we were told things may correct themselves. Sadly, at each appointment and scan we were told more bad news. We had an MRI scan around week 26 and it was confirmed your cerebellum was underdeveloped, possible blockages in your kidneys and your eyes were very small, indicating a chromosomal problem. Not long after we decided to go ahead with an amniocentesis to find some more definitive answers and shortly after 30 weeks, we found that you had Patau's Syndrome. It was heart-breaking. We were told the worse-case scenario, that you may not make full term or may only live minutes after being born, however, we knew your heart was strong and we felt we needed to give you the chance of life. I was feeling you move often and felt such a bond with you, the thought of letting you go now just didn't feel right. We chose to let nature take its course and we are so glad that we did. Our experience with you in our lives was such a positive one. You were born strong and took to your feeds straightaway. You were also able to breath on your own, all of which we had been told you may not be able to do. We knew that you probably wouldn't be able to see as you were born with very small eyes however, we recognise that you never needed sight anyway, you were here to feel, give and experience love. We were overjoyed that we were able to bring you home just 3 days after being born. Infact you were well enough to come home a day sooner, but it was me needing to stay in another night that kept us in hospital. We had the care of the community nurses coming to see us at home for the first 10 days but as you were doing so well, they no longer needed to be with us as often. You were such a calm baby and loved nothing more than to snuggle up close with us all. You fed well from your bottle and the only issues we had was a bit of colic and nappy rash, just like many other babies who are born healthy. We really got to enjoy your time with us all as a family and feel incredibly lucky for this. You got to spend lots of time with your proud big brother and he loved helping to feed you and enjoyed lots of cuddles. As we were home, your grandparents were able to spend time with you as were other family and friends. You grew well and your weight reached 8.9Ibs. We had visits to the shops and park together, such special times. A photographer came to take pictures of us all together at home which I am so happy about. Precious memories that we will treasure always.
You passed away in our arms on the 2nd of August at 5 weeks old. You were with Mummy, Daddy, and your brother Alu, in the calm and peace of home. Just before midnight you started to struggle with your breathe but came back round allowing us a little more time together. We sang nursery rhymes to you and snuggled up close. At around 2am you started to struggle again, and we let you go shortly after. We were told that if ever you did start to struggle breathing, we were to stay with you helping you to feel safe and loved but not needing to do any more. Such an alien thing to do for a caring and loving parent. Our instinct was to try and keep you with us, but we knew in our hearts, we needed to let you go. We find solace in that you died at home without the chaos of a hospital, without strangers around, just surrounded with the love of your family in the safety of our home. In your short life you brought so much positivity and love. If it wasn't for you, we wouldn't have experienced all the love, care and support we have received from others. We are eternally grateful to you for the huge amount of love and happiness that you brought into our lives. You have enriched us and even though you are no longer with us in person, your love and memory will stay with us always.
Until we meet again our beautiful baby girl. Liyana, we love you more than words can say and always will. Hugs, love and nose kisses, Mummy, Daddy and Alu xxx
Sonia Ngetu, Liyana’s Mum
November 2022