Baby girl fights to survive after parents told to say goodbye when she was eight days old

A Gloucester couple, who were overjoyed to welcome their premature baby girl into the world, were unprepared for the devastating news about her health. When she was just eight days old, doctors told mum and dad that it was time to say goodbye to their little Bonnie-Lou due to her severe heart condition.

However, this little fighter has finally spent her first night at home after enduring months in hospital. Proud parents Shell Bradbury, 23, and Shane Stokes, 26, are now cherishing every moment with four-month-old daughter Bonnie-Lou and their 15-month-old son, Luca.

During her pregnancy, Shell had a sense that something wasn't right as Bonnie-Lou was not very active in the womb. Shell expressed her concerns at the hospital, leading to close monitoring of both mother and baby.

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The medical team decided that Shell should be admitted to the hospital while awaiting a planned C-section. However, Shell went into labour before the planned delivery date, and Bonnie-Lou was born five weeks prematurely on June 28 this year.

Within minutes of Bonnie-Lou being born, the team at the delivery suite at Gloucestershire Royal Hospital detected the baby girl had problems with her heart. As there were complications with Bonnie-Lou and she needed specialist medical support, mother and baby were taken to Bristol Children's Hospital by ambulance as soon as Shell was stabilised following the C-section.

Shell said: "I had known something was not right during my pregnancy with Bonnie-Lou. I had been in and out of hospital a few times, however I had to dig my heels in when I had not felt any movements from her for a day.

"I was admitted into hospital so we both could be monitored and it was decided eventually to book a date for me to have and C-section. Despite the date being made to deliver her, Bonnie-Lou decided to come early, and she was delivered by emergency C-section.

"The midwives and doctors knew there was a problem with Bonnie-Lou the first minute she was born. They had to stabilise her and me before we could travel and we were blue lighted to Bristol Children's Hospital, where she was admitted to the Paediatric Intensive Care Unit."

It had been determined there had been too much amniotic fluid around Bonnie-Lou when she was in her mothers womb and may have been the reason Shell did not feel much movement from Bonnie-Lou during the latter part of the pregnancy. This is called Polyhydramnios and the NHS website states: "Polyhydramnios is when there's too much amniotic fluid (the fluid that surrounds the baby in the womb) during pregnancy. It's not usually serious and there's often no cause."

Bonnie-Lou has been diagnosed with DiGeorge syndrome. According to the NHS website: "DiGeorge syndrome is caused by a problem called 22q11 deletion. This is where a small piece of genetic material is missing from a person's DNA. In about 9 in 10 cases (90 per cent), the bit of DNA was missing from the egg or sperm that led to the pregnancy"

The baby girl has also been diagnosed with Truncus arteriosus which according to the Great Ormond Street Hospital website is a form of congenital heart disease, a term used to describe a problem with the heart's structure and function due to abnormal development.

She also has truncal valve stenosis which is a serious type of congenital heart defect. She also has hypoparathyroidism which according to the NHS is a rare condition where the parathyroid glands, which are in the neck near the thyroid gland, produce too little parathyroid hormone and has a weak immune system, and she also has vitamin D deficiency.

Shell said: "Even though it is not obvious, Bonnie-Lou has clef, heart and facial deformities and this is a lifelong condition. It affects her heart and she had two open heart surgeries in September.

"At eight days old we were told Bonnie was incompatible with life and to prepare to say goodbye as her arteries were sending too much deoxygenated blood to her lungs and they didn’t think she would be viable for the first pulmonary banding surgery.

"The first operation, the bilateral pulmonary bonding, was where they had put two bonds over her arteries to prevent her lungs filling up with blood.

"The second operation they had to in September, was a full repair of the heart which involved a 12 hour surgery, where they carried out a septal ventricular patching. It was not long after the second surgery, we were with her, and I noticed something was wrong, so I called the nurse and it became apparent she was in cardiac arrest.

"I have never seen a room fill up with so many medical professionals so quickly. Bonnie-Lou had to be resuscitated through chest compressions and had wires fitted into her chest to start her heart.

"It has been rough on Bonnie-Lou bless her. We have not had time to process everything what has happened yet and I think we have been on survival mode since she was born.

"We have been in hospital with her since the day she was born. We spent four months in Bristol Children's Hospital and have only just been able to bring her home which is a process in itself as she has a multi-disciplinary team involved in her care."

Shell and Shane are looking to promote the Think Heart campaign to prompt parents to be aware of heart complications which could be happening with baby both inside and outside the womb. They are looking to highlight the work heart charity Bliss do as the family has been supported by them through Bonnie-Lou's journey.

Shell said: "Bonnie-Lou, my son, Shane and mother-in-law are going to be doing a sponsored walk in Gloucester to raise money for the heart charity Bliss. We are gong to be travelling through Tredworth, up to Hartland Road, then on to White City and then Robinswood.

"People will see us shining lights along to the route to hopefully shine a light on the work the charity does and hope people can donate to help the cause. It would be wonderful if people cold donate to the cause.

"Bliss has helped me understand Bonnie-Lou's medical complications and have supported me both psychologically and financially and have been there for us whenever we have need them. The work they do is important for the families who need them."

Shell believes parents and carers should be aware of the potential signs of a baby or child developing or having a heart condition. She would like to promote the ethos of Tiny Tickers campaign to also remember to 'Think Heart' if your child is poorly.

Shell said: "It is so important for people to consider when their child is poorly, it could be heart related. Never in a million years did I think it could be a child of mine affected by a heart condition.

"It could happen to anyone. It is important to be aware of the signs, as it could save a baby's heart."

The Tiny Tickers website Think Heart message states:

Remember – Think HEART

H = Heart rate. Is your baby’s heart rate too fast or too slow? It should normally be 100-160 beats per minute.

E = Energy. Is your baby sleepy, quiet or floppy? Are they too tired to feed, or falling asleep during feeds?

A = Appearance. Is your baby a pale, waxy, dusky, blue, purple, mottled or grey colour?

R = Respiration. Is your baby breathing too fast or too slowly? – There should normally be 40-60 breaths per minute.

T = Temperature. Is your baby persistently cold to touch – particularly their hands and feet?

The date of the walk is to be confirmed as Shell and Bonnie-Lou have been poorly, however you can look for updates on when the walk may go ahead on the Just Giving fundraiser page.

To support Shell and her family raise money for the heart charity Bliss, please visit here.