Saturday, December 28, 2013

A review of Salty Baby by Orla Tinsley...

A couple of weeks ago, a visitor to this blog from Ireland alerted me to Orla Tinsley's 2010 book, Salty Baby.  Orla Tinsley was born in March 1987 and has cystic fibrosis, which was discovered three days after her birth.  I was interested in her story because I have read several books on CF and because it offered a perspective of how people handle this devastating genetic disease in countries other than the United States.  The title of Tinsley's book, Salty Baby, refers to the unusually high concentration of salt people with CF have in their bodies.

Tinsley's writing career seems to have started with a stroke of luck.  In Ireland, patients in hospitals are often kept in wards.  It was not unusual for Orla to be sharing a room with five other people.  One time, she happened to be sharing a room with a woman whose daughter was a reporter for the Irish Times.  Tinsley ended up writing several articles about CF for the Irish Times, particularly about the sorry state of hospitals for adults with cystic fibrosis.

This book is also a coming of age story.  Tinsley writes about what it was like to grow up with CF among healthy Irish kids, some of whom called her "germ girl".  She was interested in music, poetry, writing, and drama and was often involved in theatrical productions, despite being sick with CF.  I've often heard it said that kids with CF are kind of "special" in that they tend to be remarkably mature and "good".  I definitely got that sense about Orla Tinsely, who bravely seemed to want to wring everything out of living as she could, even as she saw some of her friends dying of the same disease she was born with.

Tinsley had grown up going to a children's hospital, where her illness was taken very seriously and nurses took pains to help her and other patients avoid cross-contamination.  She got her medications on time and the staff was very proactive in the care they delivered.  Once she graduated to the adult hospital, she discovered a whole new and terrifying world… where there weren't enough beds to keep CF patients from mingling with each other.  Orla saw people die before their time, mainly owing to the poor conditions in the hospitals.

In a way, cystic fibrosis seems to have given Orla Tinsley a calling.  She became an activist in Ireland, working hard to improve the sub-par conditions in hospitals for CF patients.  While she doesn't really explain everything that CF does to the body or even what it did to her body, she does explain that people who have cystic fibrosis must be very careful about not coming into contact with bugs, particularly if they come from another CF patient.  She writes of how hygiene standards were not as strict at the hospital for adults.  One time, she saw a male nurse preparing a needle with a tray that had blood on it.  She spoke up, which annoyed him… and probably spared her a serious setback in her illness.

Tinsley also goes a bit into sexuality with this book.  She realizes that she has romantic feelings for women and writes that she might be a lesbian.  And she also writes about her flirtation with eating disorders.  Although it was always my understanding that it's very difficult for CF patients to keep weight on, Orla apparently was heavier than many patients are.  On a trip to Rome, she ran into an Italian man talking to a couple of ballerinas from Ireland, who were very thin.  When the Italian guy realized Orla was also from Ireland, he was surprised because she wasn't as thin.  She didn't realize that many Italian men apparently like "curvy" women (it's my experience that they just plain like women).

Orla writes that she had to talk to psychiatrists about her eating "problems", that she claims she didn't really have.  But then she writes about being very body and image conscious.  I would imagine with a disease like CF, it must be especially difficult growing up and dealing with body image issues.  Because she has had to have so many IVs in her lifetime, her veins are all pretty much shot.  So she's had to have picc lines and port-a-caths installed in her body and she writes a bit about what that was like, too.  Due to her CF, she also has diabetes, and she writes about some of the special issues that have come up because of that.  She once got busted in the library for eating a banana and using her cell phone, which apparently results in a 10 euro fine.  

I mostly enjoyed reading Orla Tinsley's book, Salty Baby.  She is an engaging writer who has a lot to say and comes across as very personable and intelligent.  The one thing I did notice about this book is that it's a bit long and detailed.  There were times when I thought it could have been edited and streamlined a bit to make it a bit less cumbersome to read.  But overall, I was mostly just very impressed by Orla Tinsley and all she's done to make CF care better in Ireland.  I would definitely recommend this book to anyone interested in learning about cystic fibrosis, particularly as it's treated in Ireland.

Here's an article Orla Tinsley wrote for the Irish Times in June 2013…  She also has a blog that hasn't been updated in almost three years.



7 comments:

  1. Pseudoaunt has probably read this book. She's read a whole lot of CF-related books. She was born in 1987 as was Orla. I need to read it. I'm curious as to how treatment in Europe differs from treatment here. pseudoaunt's doctor treats primarily juveniles, but sees a select few adults as well. He sees pseudoaunt because she in physiologically immature. He says he'll continue to see her for the foreseeable future. Authorized CF treatment programs here are almost exclusively segregated by age; hardly any physicians see both children and adults.

    Pseudoaunt's diagnosis was missed initially. She obviously has a slightly milder-than average case since she's alive with no lung transplant, but hers was not the adult-onset variation that occaisionally comes up; she's always had CF. She and her father are fighting the hospital where she was born for access to medical records. He has evidence he's uncovered on his own that lab work from when she was a baby was mixed up and that another baby's parents were given her lab results. He could have quietly and unofficially gone about investigating on his own while he still had staff privileges at that hospital, but with HIPAA regulations being what they are now, he did not want to face any charges of impropriety for unauthorized accessing of confidential medical records. He and pseudoaunt are in litigation with the hospital for the right to access the records of all babies born within 48 hours of her birth to determine exactly what went wrong. The hospital is fighting them at every turn. The stupid thing about it is that now pseudoaunt may sue the hospital for damages, but she would never have done so had the hospital been forthcoming with the information she requested in the first place. It could have been provided to her with names redacted to avoid violating anyone else's confidentiality. Through accessing of public records and tracking down as many families of the babies in the nursery at the same time she was as possible with just public records, her father has already found the baby who in all likelihood erroneously received her diagnosis. That family is not nearly so wealthy as is pseudoant's family and has, as a result of information they received from pseudoaunt's father, already settled out of court with the hospital (and lab, which is separately owned and operated if my information is correct) for subjecting their child to unnecessary drugs for a couple of years as a result of the hospital's error. Both the hospital and the lab forked over a nominal amount to the family for, in return, both confidentiality on the part of the family and for no admission of tort liability or of any other wrongdoing. Had the hospital coughed up (no pun intended) the requested information, the other family never would have been contacted by pseudoaunt's father and wouldn't have known of the bungling of records. They probably instead would have considered it a miracle that their child was mysteriously healed of CF. The hospital wouldn't have needed to pay off either that family or pseudoaunt.

    Pseudoaunt's parents were not very kissy people even when she was a baby, or they probably would have figured out what her problem was. Everyone always knew there was a problem. She'd been to diagnostic clinics. It didn't even occur to anyone that it was CF because that should have come up in neonatal testing. It was actually pseudouncle who figured it out as a medical school student and insisted that it was CF. Pseudoaunt always tasted salty to him whenever he kissed her forehead or cheek. Pseudoaunt's dad and two of her brothers laughed at him and said it was a case of "3rd-year-med-student-diagnostitis," which is when a 3rd year-medical student applies a diagnosis of every disease or condition he encounters in medical training to someone he knows. They all had to eat crow when he was right.



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  2. Dealing with the guilt over her late diagnosis has been extremely hard on her parents -- her mom's an RN and her dad's an OB-GYN. It's not really her dad's field except that it's usually a neonatal diagnosis. Her dad is semi-retired now, mainly because insurance premiums for protecting his rather large estate soak up close to everything he would earn. He covers one weekend a month for a local OBGYN practice. He doesn't see any money for the work, but the doctors in the practice guarantee to cover his liability in full. Then he gets to have enough patient contact hours to keep his license current and gets to deliver babies, which he loves to do. It's worth it to the OBGYN practice because the three of them have the one weekend a month (or two in a five-weekend month) that none of them has to cover, plus he covers vacation time for them as well. Furthermore, they have more control over who delivers babies when they're not on call than if they partnered with another practice. Pseudoaunt's father is very skilled in dealing with high-risk pregnancies and deliveries, and has seldom been sued; it's just that obstetrics is a specialty with incredibly high liability.

    Anyway, pseudoaunt's father now visits every baby he delivers and kisses it on the head before it is released from the hospital. He says maybe one day he'll discover a case of CF on which a lab test was bungled, although he says he thanks God each time a baby is not salty. He says after the fact that he does remember that pseudoaunt was a salty child, but he wrote it off to her activity level and high rate of metabolism, which made her a sweaty little girl. Additionally, Cubans are considered very low risk for CF. It's largely a northern European thing.

    In pseudoaunt's case, because her CF was milder than average though she's had numerous brushes with death, some aspects of her upbringing were better for her without the diagnosis. Her father took his kids running almost every day of their lives in which he was home at an appropriate time for running if they were not ill or injured or if he wasn't ill or injured, and they played competitive tennis from very young ages. Regular cardiovascular exercise is highly beneficial to a CF patient. The running and tennis gave pseudoaunt increased lung capacity. In theory, her father could have encouraged her to exercise had he known of her CF, but most likely he would have felt sorry for her and would not have pushed her as hard as he did on days when she said she didn't feel up to running or playing tennis, or her mom would have interceded on her behalf because SHE felt sorry for her. In any event, she certainly wouldn't have been an NCAA Division I athlete. (She was on a "student-athlete" scholarship and was low-ranking on the tennis team, but retained her scholarship and place on the roster so that she could bring up the team's and athletic department's cumulative GPA.) Her life experiences would not have been nearly so diversified.

    She would have been coddled to some degree had her parents known she had CF. Her parents never would have let her go away to college two thousand miles from them at the age of 16. she probably wouldn't have met her present husband. Her life would have been not nearly so fulfilling had her parents known what was wrong with her.

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  3. Pseudoaunt is a talented writer. She has a book project on file, and she works on it when she's recovering from illnesses and is housebound. If she gets pregnant, she'll probably be home for most of the pregnancy and will devote time to it then.

    Other than not having the daily medications (inhaled steriods, antifungals, and antibiotics) and procedures prescribed for CF patients, her medical care was good. Her parents and her physician knew she had chronic respiratory issues and were on top of the situation whenever she developed pneumonia. She tended to receive prompt diagnoses and proactive care in that regard, so her pneumonia usually didn't get out of hand. When she was three or four, when she was maybe thirteen, and in her first or second year of college, she had very serious cases of pneumonia, but all her other cases of pneumonia were minimal because she received prompt and effective treatment.

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  4. I just learned a couple more things. my mom said she and my dad underwent genetic testing for CF because of the high incidence of the illness among both the Irish and the French Canadians. Genetic testing for CF only catches 70 to 90 per cent of carriers because such a wide variety of genetic mutations can cause the condition if both parents are carriers. Neither she nor my dad are carriers of any tested CF-causing genetic mutations. My dad is a Tay-Sachs' carrier. I'm not sure how that works,but either Matthew or I could be carriers of Tay-Sachs'. I will need to undergo genetic testing with my spouse before I conceive any children. My mom said that maybe by the time either Matthew or I are ready to have children, maybe CF testing will be better. She still thinks Matthew and I might be at risk to be carriers because of our combined Irish-FrenchCanadian blood. My dad's siblings all married Scandinavians, most oh whom aren't at great risk for CF or Tay-Sachs'.

    I also learned that Cubans have the highest incidence of CF of all Latinos. Theyre still lower than the US rate, but higher than any other latin American nation.

    The pseudos had genetic testing. Pseudouncle has none of the mutations that show up in testing; they're probably safe, He's Swedish and Danish, both of which have low incidence as northern Europeans go.

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    1. Alexis, I'd be interested in your thoughts of this book. Orla mentions some of the things you wrote of her, like the sweat thing. She also exercised a lot-- swimming and horseback riding. Your pseudo family sounds very devoted to each other.

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  5. That was me who wrote you about the book Salty Baby!!

    So glad you enjoyed it. You wrote a great review of the book.

    Happy New Year to you!!

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    1. Thanks Enie! I did enjoy the book, so thank you for the recommendation. Happy New Year to you, too!

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