'Starving' teen, who throws up 30 times a day, finally gets help from Scotland for her treatment
Caitlin White is a 19-year-old who lives her life with a rare stomach disorder. The problem doesn't sound so severe however until you find out that she has now been left emaciated because she throws up more than thirty times in a day. White also says that she feels like the doctors have "abandoned" her.
The teen is 5ft 5inches tall but weighs only 38kgs or 84lbs. She has claimed that the medics at the Ninewells Hospital in Dundee "left [her] to die" after they discharged her and refused to give her any further treatment. This was due to a series of failed attempts between 2014 and 2015 in which they had attempted to insert feeding tubes into her. One of these attempts also left White fighting for her life against a deadly blood infection called septicemia.
White currently lives in Perth, Australia with her grandparents. She lives off soup, gels, and powders but she is not able to absorb enough calories from food. She also had severe abdominal pain because of gastroparesis which is a condition that leaves her stomach partially paralyzed. This has also, in turn, led to her developing cyclical vomiting syndrome which means she ends up being sick more than thirty times in a day. Her health is so feeble that she has to use a wheelchair when she goes outdoors.
White spends about eight to nine hours every day at the Perth Royal Infirmary (PRI) getting infusions of potassium, magnesium, iron, and phosphate to keep her body running but there's an issue. The hospital does not have the specialist with the expertise to prescribe White with artificial feeding.
The teen also suffers from extreme constipation with bowel movements happening only every six to seven weeks. This has led to bacteria building up in her small intestine which has in turn practically ruined her immune system. White has been though sepsis five times since October last year.
She told The Scotland Herald: "It's getting to the point I've become resistant to so many antibiotics that they don't know what they're going to do when it flares up again. I'm exhausted. I'm in a wheelchair. I have to eat and drink myself orally because Ninewells have refused to offer artificial nutrition since 2015 and my weight is dropping."
"PRI are very worried. We're at a stage where they said they don't think I'll be here in six months unless we get a proper care plan in place."
Roseanna Cunningham, the Scottish National Party (SNP) Member of the Scottish Parliament for Perthshire South, has been pursuing the case and she has raised the issue with the Health Secretary Shona Robison, whose constituency also covers Ninewells. The case has also been raised with Paul Gray, the chief executive of NHS Scotland, Catherine Calderwood, Scotland's chief medical officer, Lesley McLay and Professor John Connell, former NHS Tayside bosses, and last but not the least, John Brown, the new chairman.
White has been in this serious medical dilemma since she was just 15-years-old when she started throwing up and had severe stomach pains. Her weight dropped drastically from 63kgs to 50kgs in only three months. She was admitted to PRI in August 2014 after she started vomiting a black liquid. The doctors there diagnosed her with stomach paresis and she was then transferred to Ninewells where she was kept under observation for ten months.
The doctors there had told her that she would be fitted with a "stomach pacemaker" which is a device that can artificially stimulate the stomach muscles with small electrical impulses. The promises were made but when she finally went to Ninewells to get the pacemaker fitted, the gastroenterologists at the hospital said that they were going to use that only as a last resort. This is when they tried putting the feeding tubes instead.
Ten months down the line and White had eight feeding tubes that were surgically inserted in her through her nose and four that were inserted through the abdomen.
The point was to bypass her gut and get the food directly to her bowel. She has a condition called Ehlors Danloss syndrome as well as the constant puking and this meant that her muscles are abnormally loose. This subsequently led to the tubes coming loose and it would happen sometimes just hours after surgery.
White also had to go through Total Parenteral Nutrition (TPN), where the protein, glucose, and other essential nutrients were pumped directly into her bloodstream but this was halted when she developed septicemia in March 2015. She said that the doctors at Ninewells just "gave up" when a fourth attempt to feed her through an abdominal tube ended badly in June 2015.
White said: "They took the tube out and the consultant at the time said 'go home, try the oral route, we can't do anything else for you'. That was it. I asked numerous times about the stomach pacemaker but it was never mentioned again."
68-year-old Laura White, her grandmother, says that the family has been left devastated and are "totally bewildered" at the way her granddaughter was given treatment at Ninewells. She also said that the staff at Ninewells had suggested White herself was responsible for removing her feeding tubes because she had an eating disorder and that her terrible stomach cramps were just imaginary "phantom pains".
White's family has paid for a lot of private consultants in Scotland and London to take a look at her case and one gastroenterology expert weighed in saying hers was the worst case of gastroparesis he had ever seen in his life. All of the care plans, scans and tests that have been recommended by the private doctors, however, have been rejected by NHS Tayside. The family is now trying to put together £3000 through Justgiving to pay for all the genetic tests that have been recommended.
Now, according to a report in The Herald Scotland Dr Catherine Calderwood, Scotland’s chief medical officer, has taken interest in the case and has ordered NHS Tayside to refer the teen to NHS Greater Glasgow and Clyde where she will be seen by Dr Ruth McKee, one of Scotland’s leading gastro experts and a colorectal surgeon.
White said: “We’ve been trying to get them to refer me on to someone else for two years. Before they said it was never an option; now they’re saying they’re ‘more than happy’ to make the referral.
Dr Calderwood knew how upsetting the case had been for White and her family and felt that it was appropriate that under these exceptional circumstances a referral to the Glasgow Royal Infirmary could help Caitlin get some respite from her condition.