31 Day Blog Challenge (Day 24)

A Difficult Time in my Life …..

That was probably the time I lost my daughter. It has left such a whole in my heart and life.

She was born 6 weeks premature. And after tests found out she had only 20% kidney function. Also a cleft palate. (We were lucky that it was only the roof of her mouth, and not the lip too.

It took us a while to get her home, the biggest baby in the premature unit, her temperature wouldn’t stabilise, she wouldn’t feed properly and she would get an infection at the slightest thing.

But we got her home eventually. Then she got a really bad urine infection, and we were rushed up to Great Ormond St. Hospital. It took us almost 3 months to get her home.

This was then our life ……. she’d get infections. We’d have to go to the hospital, I’d stay there with her. She’d get better, we’d come home.

There were other problems …… She had problems walking. She had a learning age of half her age.

As she grew older, her problems increased. She had numerous operations on her palate. She had a kidney transplant. She also had the occasional seizure. And through it all she kept her smile and cheeky disposition.

In August of 2013, she developed a cold, which turned into Pneumonia, double pneumonia, the para-influenza. She was transferred to a London hospital after they performed a technic with an ECMO machine.

Extracorporeal membrane oxygenation(ECMO), also known as extracorporeal life support (ECLS), is an extra corporeal technique of providing prolonged cardiac and respiratory support to persons whose heart and lungs are unable to provide an adequate amount of gas exchange or perfusion to sustain life. The technology for ECMO is largely derived from cardiopulmonary bypass, which provides shorter-term support with arrested native circulation.

This intervention has mostly been used on children, but it is seeing more use in adults with cardiac and respiratory failure. ECMO works by removing blood from the person’s body and artificially removing the carbon dioxide and oxygenating red blood cells.  Generally, it is used either post-cardiopulmonary bypass or in late stage treatment of a person with profound heart and/or lung failure, although it is now seeing use as a treatment for cardiac arrest in certain centers, allowing treatment of the underlying cause of arrest while circulation and oxygenation are supported.

She amazed the doctors and nurses with her resilience. Her sense of humour often had us in stitches. But with her being on a breathing machine, it was hard for her to talk. Nether the less she found a way around it.

But in January 2014, she lost the battle, her body couldn’t take it, and she developed sepsis.

Sepsis is a life-threatening condition that arises when the body’s response to infection causes injury to its own tissues and organs. Common signs and symptoms include fever, increased heart rate, increased breathing rate, and confusion. There may also be symptoms related to a specific infection, such as a cough with pneumonia, or painful urination with a kidney infection. In the very young, old, and people with a weakened immune system, there may be no symptoms of a specific infection and the body temperature may be low or normal, rather than high. Severe sepsis is sepsis causing poor organ function or insufficient blood flow. Insufficient blood flow may be evident by low blood pressure, high blood lactate, or low urine output. Septic shock is low blood pressure due to sepsis that does not improve after fluid replacement.

She died a week before her 21st birthday.

The death of anyone you love is hard, but the death of a child (and she was the youngest) is not something you should not have to go through.

It’s almost 6 years, and it’s just as fresh as the day it happened. But with time, you smile more, you laugh more, and you remember her without always crying.

So that’s my most difficult time in my life.

🦋

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