6.7 C
Dorset
Saturday, February 15, 2025
HomeDorset NorthIona's Story

Iona’s Story

Iona was born on 15th June 2011 and has the same very rare chromosome disorder as her older brother Findlay although unfortunately she is more severely affected than he is. The chromosome abnormality affected her growth and development before she was born so she was extremely small for her 35 week gestation at 3lb 5oz and had the medical issues you would expect from an extremely premature baby. During her stay in neonatal intensive care she had pneumothoraxes (lung collapses resulting in needing a chest drain), intraventricular haemorrhages in her brain and bilateral pumonary interstitial emphysema (a very serious lung condition). After spending 31 days in the neonatal unit Iona was transferred to Royal Aberdeen Childrens Hospital.

Like her brother Iona has severe reflux including biliary reflux (where she refluxes from her bowel back into her stomach) and her medical team went down the route of all of the reflux medications, they then changed her from bolus feeds via her nasogastric tube
(she has an unsafe swallow so has always been tube fed) to dripping small amounts of milk in continuosly via a feeding pump. She continued to vomit so they then changed her from an NG tube to an NJ tube which bypassed her stomach and then at 13 weeks
old she had surgery to have a jejunostomy tube fitted which goes straight into her bowel. Despite this and a very high calorie intake she was still not putting on weight and tests showed that she was malnourished due to intestinal failure so the decision was made to
put her onto long term TPN and Lipids. This required another surgery to insert a Hickman line for the intravenous feeds to run through. She started to put on weight with the intravenous feed but the downside was that it caused problems with her liver and she had numerous Hickman Line infections which caused her to become septic and extremely seriously ill. Each time she aquired an infection she had to have high
doses of very strong antibiotics to try and kill the infection and often required surgery to remove the line and then 5 days later once the antibiotics had killed off the infection she required more surgery to put a new line in.

In January 2012 Iona managed to maintain her temperature enough to finally come out of a hot cot and move into a standard cot. Noone was more excited about this than Findlay as it meant there was now plenty of room for him to cuddle up with her which the
hospital staff encouraged. We also got her first ever smile this month.

Iona finally came home from hospital for the first time in May 2012 at the age of 11 months, a hugely emotional day for us and also for those members of hospital staff who were close to her. In June she had her hickman line removed and is now on 100% jejunal feeds and she is putting on weight albeit at a very slow rate.

Iona has many issues as a result of the chromosome abnormality including poor thermoregulatory control, gastric dismotility, hypothyroidism, failure to thrive, severe developmental delays, severe hypotonia and hypermobility and it is highly likely that in time other issues such as learning disabilities and behavioural issues will become apparent. As yet Iona has thankfully not had any seizures but the consultants have reminded us that epilepsy may still show itself in the future. Iona also has a rare condition called Sandifer Syndrome. With Iona this causes her to go into opisthotonic posturing which is a state of severe hyperextension and spasticity along her head, neck and spinal column.

Like her brother Iona has a busy daily schedule of therapy. We are working especially hard with her physio as Iona’s hypotonia and hypermobility is much more severe than Findlay’s and so at 15 months of age she is unable to roll over, hold her head or sit without support up to her neck and she is also showing some issues with her right hand side which could be the result of damage from the intraventricular haemorrhages in her brain she had as a newborn.


Iona’s first Christmas


Iona in February 2012


Iona’s first night at home- May 2012


Our gorgeous girl in August 2012

Please like our Facebook Page

To report this post you need to login first.
Dorset Eye
Dorset Eye
Dorset Eye is an independent not for profit news website built to empower all people to have a voice. To be sustainable Dorset Eye needs your support. Please help us to deliver independent citizen news... by clicking the link below and contributing. Your support means everything for the future of Dorset Eye. Thank you.

DONATE

Dorset Eye Logo

DONATE

- Advertisment -

Most Popular