Chloe’s Story

Initial Diagnosis

On the 20th November 2016 our daughter Chloe was born in Southampton. Prior to birth we were aware that Chloe would have additional needs. It all started months before…

During the pregnancy amniotic fluid was building up in the womb, this obviously isn’t normal. Usually a baby will swallow and then pee out this fluid, keeping the fluid level stable. Our Consultant diagnosed a blockage in the gut which was preventing the fluid passing through. This is known as a duodenal atresia, you can read more about this condition (affecting 1 in 10,000 babies) on the NHS website here.

We were therefore advised that in the first few days of the baby’s life the baby would need a small procedure, just to relieve this blockage.

Whilst having this fluid drained off (about 1-2 litres), of which we had to have this done twice, our Consultant was able to send off and have the fluid analysed. The reason for this being that often there is a deeper cause for this blockage occurring.

Whilst the normal tests came back normal – these are tests looking at downs and similar known abnormalities, further chromosome studies found that our baby had a duplication of chromosome 9 and a small deletion on chromosome 10. This was very rare, in that from previous occurrences of this, no baby had yet survived birth. This was all discovered a month or so before birth.

Following Birth

Chloe was born weighing 3lbs 3 ounces following a successful cesarean. A team from Neonatal was in attendance to assist as were other key Consultants. The following day Chloe had the small procedure to correct the duodenal atresia, this went very well – the scar has almost disappeared  now.

We spent the next 3 months in the Neonatal department learning more about Chloe, after which we were discharged and able to bring Chloe back to our home. Chloe is currently at home with us as a family, with oxygen, feeding tube and a tube to keep her airway open. Chloe is special to us, and we are adjusting to her and her needs – but as a family we are beginning this journey together, which is what matters.

Family Photo

Timeline

As many people will know Chloe has had quite an inspiring and busy first few steps since birth. Here is a quick timeline of events that have occurred in Chloe’s life so far… and those planned for the near future as well.

November 2015
Day 1 – Chloe is born on the 20th November via an emergency cesarean. Chloe is admitted to Neonatal.

Day 2 – Chloe has duodenal atresia surgery to unblock a blockage in Chloe’s gut. This was identified on ante-natal scans.

March 2016
Chloe is discharged from the Neonatal department and allowed to go home for the first time, having spent 15 weeks in Neonatal.

June 2016
Procedures undertaken to tap and remove fluid from Chloe’s brain to ease pressure.

July 2016
Chloe underwent cranio-facial surgery at the John Radcliffe Hospital in Oxford. This major surgery made significant alterations to Chloe’s skull – ensuring the brain had ample space to grow. We were up at Oxford for a couple of weeks following this surgery as Chloe recovered in Intensive Care.

October 2016
Surgery performed to insert a peg into Chloe. This peg would allow Chloe to be pump fed through a tube straight into Chloe’s stomach, rather than than through a tube in Chloe’s nose.

November 2016
Chloe’s 1st birthday, shared with her brother Daniel – although 3 years apart; both on the same day.

December 2016
Chloe underwent surgery at Southampton General Hospital to have a VP Shunt inserted into her skull, this valve would allow excess fluid to leave Chloe’s brain, ensuring pressure was maintained.  Surgery was repeated 16 days later when the valve needed to be replaced.

January 2017
Further surgery to re-do the VP shunt, as this was blocked and not working properly.

February 2017
Peg (feeding tube) replaced. The peg is usually replaced every 12 months. Chloe has all of her feeds via this feeding tube into her stomach.

March 2017
Cleft Palate repaired, surgery took place in John Radcliffe Hospital in Oxford. Chloe was in Intensive Care for 2 weeks following this surgery.

November 2017
Chloe’s 2nd birthday.

January 2018
Lung Bronchoscopy. Surgical investigation to look at Chloe’s left lung, why the left lower lobe keeps collapsing and investigate lung anatomy.

Jejunostomy tube placed into Chloe’s bowel to bypass the stomach, however this caused further issues and was shortly afterwards removed.

March 2018
Chloe has started a blended diet (purees) through her feeding peg/tube alongside her existing milk feed.

May 2018
Chloe has had glasses fitted, previously unable to fit glasses due to abnormal face symmetry. Chloe can now see further and enjoys wearing the glasses.

After another lung bronchoscopy Chloe was issued with a ventilator for use at night. Since this time, we have had a reduced amount of chest infections.

…November 2018
Chloe’s 3rd birthday.

 

Planned for the near future…
Further cranial-facial surgery – To further the surgery carried out in June 2016.

Heart Surgery to correct and fix a hole (ASD) which Chloe has.