Pride and worry as a neonate's grandparent - Karen's story

Lizzie 1

Karen describes how challenging it can be watching both your children and grandchild experience neonatal care.

Just before my daughter-in-law Lisa became pregnant, she was diagnosed with Cushing’s disease. Both that diagnosis and discovering she was expecting another baby came as a total shock. Her consultant advised her not to have the baby as her own health would be at risk, but Lisa was determined to go through with the pregnancy though it was also complicated by gestational diabetes and pre-eclampsia.

Five months into the pregnancy, Lisa had surgery to remove the tumour on her kidney caused by the Cushing’s. It was a very risky operation for herself and her baby. Lisa and my son have four other children who were aged between 7 and 16 at the time and it was a difficult time for my son emotionally, worrying about his wife's health and the children's fears for their mum.

Then at 30+6 weeks’ gestation, my granddaughter Lizzie was born by emergency caesarean, weighing 2 lbs 15 oz. Lisa had only told family and very close friends that she was pregnant in case anything went wrong and the baby didn't make it, and it wasn’t until Lizzie had come home after being in the neonatal units of two different hospitals for the first 43 days of her life that Lisa announced her arrival.

Lizzie incubator

For those weeks, after Lisa was discharged from hospital, she made the 45-minute journey to the hospital two times a day, every day to look after Lizzie. She must have felt exhausted since she was in poor health herself and also caring for her other children. My son also travelled to the hospital every night after a full day working as a tree surgeon. I worried about him too, being 60 feet up trees while he was so anxious about his family.

Luckily my grandchildren have wonderful parents who have brought them up to be very able and adaptable but it was so hard for them all in different ways.

As a parent and grandparent, I saw my children hurting, scared and upset and I felt useless because I couldn’t make everything better for them. Normal family life was on hold until the stress and worry gradually subsided. Lisa’s family had also gone through a heart-breaking time the year before as her sister gave birth to twins very prematurely and sadly one of the babies died at just a few hours old.

There were times, when I was alone and could have a good cry, that I was frightened that Lizzie wouldn't get better. In hindsight, I wish I had spoken more about my feelings then as when they did surface openly they were harder to deal with.

Lizzie dress

The first time I saw Lizzie will stay with me forever. Nothing could prepare me for seeing such a tiny, poorly, helpless baby in that incubator. But the staff on the neonatal units were amazing: they reassured us and most of all, gave us hope. When she was 15 days old, I held her in my arms for the first time and the feeling was incredible. The power of love I felt for her was indescribable.

Our darling little Lizzie is one year old and despite a few health setbacks, including having chronic lung disease and catching bronchiolitis over the winter, she is thriving. Her smile lights up the room and she is adored by everyone. It is a joy to see her brother and sisters, who absolutely adore her, caring for her. My son is a fantastic, fun dad and the children all admire, respect and love him.

I don't know where Lisa’s strength comes from but she is honestly the bravest mum I know. I am so grateful to her for giving this miracle baby the gift of life. I am so proud to have her as a daughter-in-law and of all my grandchildren.

Lizzie xmas