In September 2013 our little Farrah was born, she was born before her due date due to pre-eclampsia. We had already lost her twin during my early pregnancy due to stress. Farrah was a miracle as we never expected to have her, and she was diagnosed at 20 weeks with a hole in the heart or left sided VSD (A ventricular septal defect is an opening in the ventricular septum, or dividing wall between the two lower chambers of the heart known as the right and left ventricles. VSD is a congenital (present at birth) heart defect. As the fetus is growing, something occurs to affect heart development during the first eight weeks of pregnancy, resulting in a VSD)
Farrah was cared for at initially at St Mary's hospital in Manchester the most publicised centre of excellence and after 2 weeks after being told she was "fine to transfer" " your baby is not the sickest baby here" and that "Its a postcode lottery" not by the dedicated nurses but the matrons and consultant. She was transferred to Royal Bolton Hospital in the NICU (Neo Natal Intensive Care Unit) http://www.boltonft.nhs.uk/services/neonatal-unit/ and on reflection we are so thankful she was transferred although dead against it at the time.
Farrah was cared for by a wonderful family of nurses, educators, doctors,registrars,consultants,advanced nurse practitioners, dietitians and allied professionals. Unfortunately with everyone's best efforts Farrah lived for 46 days, the best, most precious and testing 46 days of our lives as parents.
When you have a baby under these circumstances as at least 22 other families have on this unit annually, you are in a whirlwind, living on your nerves and consumed in the life of your baby, praying and willing them to live and you forget to do the normal things that new parents do like taking photographs, recording milestones and making memories. All that is in your mind is progress, how many mls of milk has she taken, is she sleeping, has she put on weight, is she having a good day or a bad day, can we hold her? but you forget to write it down and taking photographs is difficult as the babies eyes are sensitive and flashes can cause lasting damage.
Farrah was perfectly beautiful, amazed us daily and so breathtaking! As well as being a determined little lady and the most precious gift ever given to us. She made us so proud to be her parents and although so small she had a personality all of her own.
The nurses referred to her fondly as a "Diva" when she had her dramatic times, "Nowty-Knickers" when she would not comply removed her breathing tubes and cannulas and " Old lady" as she was one of the oldest neo-nates on the unit but the smallest.
The nurses loved her and on Doctors round they referred to her as "Our Farrah" they were wonderful and part of her family.
We will be ever grateful to the team at Royal Bolton, namely Dr Ulla El Kafrawy, Dr Archana Mishra, Dr Simon Power, Dr Shanmugra Sundaram ( Sunny), Dr Mahesh Yadav, all the registrars especially Kamal and Dorothy and the Fabulous nurses especially Chloe Anita,Trish, Annie, Angela, Dawn, Nick, Sam, Specialist Educator Wendy and ANP Kath or Auntie Kath as she called herself! We cant remember everyone's name as it was all very intense and a whirlwind and we were unable to write everything down, but we thank everyone equally.A special thank you to Chloe who cared for Farrah even after she had passed away, supporting us to spend time with her and hold her, without the wires, the C-PAP just her, us you and the other nurses who took turns at holding her for us.
We also would like to thank Kath Eaton,Nicola,Gemma,Sam and the other desperately dedicated nurses at St Mary's who work in very stressful conditions and ever decreasing nurse numbers and Ted Gasirowski, Ruth Goldstein consultants. There are other nurses, we can remember faces but not all the names and we are sorry for this as you do a fantastic job. We only wished we could have been with you longer and that you were not so over burdened.
The hope was that Farrah would put on enough weight to have surgery at Alder Hey for her heart condition but she was unable to reach her goal weight due to expending energy, her heart problems, diuretics and an infection. Farrah was on C-PAP when in hospital but also developed an additional irregular heart beat.
On NICU's there are strict visiting policies, usually restricted to parents grandparents and siblings. No aunties or uncles, cousins, friends of the family are permitted. Its not a natural way a baby enters the family as most have never seen the baby they hear about. Some of the family did get to see her the day before she died as we had her baptised in hospital and we will treasure this memory.
When your baby dies you are left with memories yes, but you forget the small things that happen each day as you are living in the moment and it is our wish to support families in legacy of Farrah to whilst on the NICU to build memories to cherish for the future by providing them with life journals and equipment to take photographs.
Our aim is to purchase tablets to be used in the hospital and develop an app to support families to record milestones, take photographs and record videos as well as provide links, information and support available from http://www.bapm.org/ http://www.bliss.org.uk/http://guidance.nice.org.uk/QS4
who support families at this time and if they lose their child and set guidelines and regulations.
As family is so important, we hope that the use of Skype will support families to keep in contact with each other and help them become part of the babies life albeit from a distance, especially for parents who cannot leave the hospital due to the critical needs of the baby.
We know that most families wont have to go through this and will go home with their baby and the days on the neo-natal ward will become a memory of the past. They will have a record of their babies early life that they can show them when they are older, this is what we were planning to do but did not get the chance. Yes, we have our memories and a box of wires, sensors, C-PAP hats and blankets but is never enough.
For those who sadly will never take their baby home, at least they will have a journal to treasure and when the devastation ceases they can reflect back and remember their own little Forget me not. If you can imagine having a child, (and we know there are many in this position), watching hour by hour, minute by minute and then losing them it is devastating and throughout your life you never want to forget a minute of your time together, we hope that our aim will support these families to remember each little part of the short time they had their little "forget me not".
Thank you for your support, we know there are a lot of things wrong in the world and so many in need but you really would make a difference to families if you support us to support the families to come in Farrah's name.
We long for the day to return to Bolton and provide them with this legacy for our much loved and much missed little "girly-whirly".
Farrah's Mummy and Daddy x
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