An interview with Abby Brogan

I asked Abby Brogan, the mother of Ellie, a “short gut girl”, a few questions, focusing on how they delt with the demands of a special needs child and what keeps them strong as a couple. It’s a kind of Valentine’s present for David and Jasmina. As you’ll see, they’re a charming couple and I’m grateful for advice they give with the experience they’ve lived…

Would you tell us a little bit about you and Gib

We met 9 years ago at a marine field station in the Florida Keys. We have lived in Florida, St. Thomas USVI, Virginia, Connecticut and now Massachusetts. Gib works for a marine conservation organization based in Washington and I worked at the aquarium in Mystic, CT. I quit my job and we sold our house and moved up to Massachusetts to be closer to Children’s hospital Boston, and our families. We have a beautiful little girl named Ellie. We have a blog called “The Short Gut News” that is all about Ellie and our Short Gut life. Oh, and we have a awesome dog named Gus.

Tell us how it was when Ellie came along and it became clear that she would be a short gut girl

I had a very normal pregnancy with Ellie and we had no idea any thing was wrong with her when she was born. She did come 5 and a half weeks early, so the doctor was more concerned about her lungs than anything else. She seemed normal for the first 3 hours. So I did get to hold her after my C-section, offer her the breast and get all the photos that I can’t stand to look at now. During those first 3 hours she spit up a few times, it was dark green, which now I know means something is wrong. We had a great nurse who came into check on us on hour 3 and saw Ellie spit up. She picked her up and walked straight out of the room without saying a word. Ellie was then transferred to Yale Children’s Hospital, in New Haven, and after a few tests had her first surgery at 18 hours old. I was transferred 4 hours later and didn’t see her again until the next day. We had a very talented and very nice surgeon come into my room after Ellie’s surgery, she shattered our world as we knew it. And that is when we first heard the terms “Jejunal Atrisia”, “TPN” and “short gut”.

I sometimes feel that parents with children like Ellie try to adopt a positive attitude about life and enjoying everyday for what it brings. Has it been that way for you?

Yes. If you don’t laugh at what makes others cry or cringe, then this life will make you nuts. Both Gib and I also think we are very funny, so when times get tough we do what ever we can to make each other laugh. Gib and I joke about things (and at times) that others probably think are morbid or inappropriate. I think we are the only family is pre-op holding that is joking around and having a good time.

You maintain a very concise and transparent blog. Has it given you some unexpected benefits?

Yes. It has been the best therapy we ever could have hoped for. It took me a long time to be able to write anything much less my feelings or worries. But, then it just started pouring out. It also helps when I meet other parents or get letters from other parents who say that they loved what we wrote and it helped them feel more normal. It helps knowing some one else out there has gone through and felt the same thing.

Were there some very challenging moments for your relationship once Ellie was born? How did you get through them?

We were told, along with all the other horrible statistics that come with short gut, that many marriages are broken up by a critically/chronically ill child. It sounds cheesy but we promised each other that this would not happen to us. As for challenges. I would say coming home for the first time. Not only the stress of being home with all the medical stuff, but who does what. We have “tried” to split all the responsibilities 50/50. Now this has not really worked, I am too controlling to let Gib be in charge of ordering the medical supplies and I prefer to do all the CVL dressing changes. But as for everything else. We both can do the whole TPN set up, CVL dressing changes, cap changes, G-tube maintenance and ostomy bag changes. We alternate nights doing TPN so one of us gets a break every other night. I think this has really helped. And we are both really good at making sure we keep everything as close to 50/50 as possible. If we can both do everything than one of us can just check out if they need to, to save their sanity. We also talk to each other when we start getting stressed out. It is easy to start over-analyzing everything about Ellie and let your mind travel down the path of “what if”. That can be very scary especially when Ellie is not doing great. We just try to talk to each other about what we are thinking about and remember that we will just do what needs to be done. If things do get bad, then we will just deal with that too.

Do you find that Ellie has strengthened your relationship?

We regularly look back at our life before Ellie and wonder what we did with our time. We have both found that we are much happier and more content in our lives and with each other now, even with all of Ellie’s stuff, than we were before she was born. It just seems that there is such a purpose in our lives now, that was missing before. There are now questions of what we do when a decision arises, we just do what is best for Ellie.

What do you do to maintain a healthy relationship?

Laugh, yell and then talk, talk, talk. We know each other very well and can usually figure out the real reason we are fighting when we do. We also try to be willing to admit when we were wrong, said something mean or were just bitchy. That of course is easier said than done, but we try.

Do you have any advice for parents who have a child like Ellie?

Make your spouse your rock. You both have to do this together as a team as much as you can. Do not let one person take over everything, that only builds resentments. Also, talk to each other, find a support group, a GREAT doctor, a good health care company and a nurse. Oh, yeah and laugh, when times are really tough do what ever you can to laugh. Also when you feel like your life has been shattered or turned upside down, remember that your spouse probably is feeling the same thing. Try to be there for them and let them be there for you.

Are you planning something special for Valentine’s day?

Yes, sleep. Maybe more than 6 hours? Wow, that would be great! Oh yeah, and flowers would be nice too.

All about blood and a little besides

Friday, David mentionned that Sébastien had bled through his ostomy and his hemoglobin count was low. I get confused between hemoglobins, white blood cells, red blood cells and platelets, so I googled “What is blood made of” and thought of sharing the answers with you…

In one sentence, blood is a mixture of three cells and plasma – a watery liquid. It also contains hormones, nutrients, clotting agents and waste products on their way out. The three kinds of cells are red blood cells, white blood cells and platelets. Each one has a different mission.

Red blood cells are the most numerous. Shaped like donuts with an indentation instead of a hole, they carry oxygen from the lungs and disperse it throughout the body, carrying it in molecules called hemoglobin. Imagine the hemoglobin as a bucket with four red compartments. When it arrives at the lungs, a molecule of oxygen fits in each compartment, and is carried away to the capillaries. The capillaries are the ports of arrival in our body, the tiniest blood vessels, where the exchange of water, oxygen, carbon dioxide, nutrients and waste chemicals takes place. Capillaries don’t have alot of oxygen, so, our bucket of hemoglobin, on the ship of a red blood cell, gives up its oxygen and picks up some carbon dioxide in exchange. The four red compartments of the bucket are really four atoms of iron, which give the red blood cell its color.

White blood cells are our body’s military, fighting off infection and invasion. As in the armed forces, there are three main branches: the army, the navy and the air force. White blood cells have granulocytes, lymphocytes, and monocytes. In detail, the granulocytes, come in three different types: neutrophils, eosinophils, and basophils. (The more in detail you get, the longer the names…) The first take care of bacteria, ingesting and digesting them. The second take care of parasites and the third is involved in allergies. Back up a level, to the second kind of white blood cells, the lymphocytes are subdivided in two: T cells and B lymphocytes. The T cells are the immune system directors. The B lymphocytes produce antibodies. Back up to the three kinds of white blood cells, the third, the monocytes are the largest white blood cells, and enter the body’s tissue to turn into even larger cells called macrophages which eat foreign bacteria and destroy damaged, old or dead cells of the body.

Platelets are the clotting cells of the blood family, taking care of wounds and cuts in a variety of ways: clumping up to form a clot, or breaking down when exposed to air and releasing a substance that starts a chain of chemical events, ending in a protein transforming into fibrin which forms into long threads that tangle up red blood cells and form a clot. (Yes, that was a run-on, but this is biology and not grammar!)

Plasma, the fluid that the blood cells travel in, is 90% water. The rest is protein molecules, sugar, electrolytes, hormones, vitamines and cholesterol.

My dad would find that this blog post is in keeping with my researcher’s attitude… during summer, he would laugh as I brought home a pile of books from the library on some research project or other that I’d invented for myself. The main source of information for this post comes from a PBS website article and Wikipedia.

Sunday, David left for Toronto early, as he had only been planning to leave Wednesday morning. We’d only just left David after a leisurely breakfast together at Stella’s when he called to ask for a ride. Sébastien bled again in his ostomy, and developped a fever on Sunday. David mentionned that he was septic and rather than ask him the definition, we looked it up later, and found that the web-as-doctor was still just as frightening. My husband and I hate to prod figuring that eventually the questions we don’t ask will get answered when the sting of less-than-cheerful news fades. Some view it as a fault, as though avoiding the subject shows a lack of interest, but we see it more as a desire to tread lightly. It is quite well known that men and women have very different emotional responses. A quote from “Married with Special-Needs Children” explains it well:

One wife who understood this provided excellent advice: “I think it is very important to remember that moms and dads react very differently to the diagnosis. The journey to acceptance is a grieving process. Moms often blame themselves, while the dads are more removed.”

/…/ In general, men are more prone to withdraw or attack problems pramatically rather than with emotional expression, whereas women place more value on talking about their feelings.

The second main reason we need to expect – rather than resist – differences in emotional response and coping styles is that opposites attract. We tend to become partners with people who have qualities we desire but lack. We are initially attracted to these differences and intuitively seek them as a kind of balance to ourselves. Unfortunately, we often subsequently have a growing discomfort with these same differences. For example, the man who represses his own feelings yet chooses an emotional wife may discover that her expressiveness churns his own emotions up un a way that he can’t stand.

Before setting a record for the longest post on Place de choix, I’ll finish with a quote from Emily Dickinson:

It’s all I have to bring today
This, and my heart beside

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How to live day to day after a transplant

Perhpas no one knows better how to live day by day after their child receives a transplant, than David and Jasmina. I was reminded of their resilience last week after a cheery call from Jasmina. Jasmina was talking from her cell phone, while taking Sébastien outside for a walk. “He always wants to get out and to move!” I could hear the wind and the busy streets of Toronto. So, how do parents adjust after their child has a transplant?

Transplant Living has some excellent pointers:

Focus on the joys and accomplishments of today
“Sébastien is doing good! He’s using his left arm more and more. It’s a big improvement if you think that a week ago, he couldn’t even move it!” Jasmina tells me. Not a person to spread bad news, Jasmina concentrates on finding the good things, or making light of challenging situations.

Join a support group or form a relationship with a family facing a similar situation
This is perhaps the blessing for David and Jasmina to be at SickKids. There is a special feeling of empathy and kindness there from families with sick children, to the cleaners that make their daily rounds.

Research and ask questions to learn all you can about your child’s condition and potential therapies
“There are 5 treatments Sébastien could receive…” (for his autoimmune disorder) and Jasmina detailed a list that later I found on the internet:

Corticosteroids – drugs to reduce the activity of the immune system.
Intravenous immunoglobulin (IVG) – the antibodies are ‘caught’ by the IVG and culled from the bloodstream.
Plasmapheresis – the blood is filtered through a special machine that removes approximately 60% of the antibodies in blood plasma.
Splenectomy – surgical removal of the spleen. (Sébastien’s spleen was already removed during the transplant)
Chemo – used to stop the production of antibodies.

Presently, Sébastien receives both plasmapheresis and chemo, the latter on the weekend. I am amazed sometimes, considering the complexity of Sébastien’s case, at how David and Jasmina implicate themselves in Sébastien’s treatments. 

Be easy on yourself when you’ve had a bad day
Call a family member, call a friend, read a magazine on another subject, or take an hour off to do something else.

Learn about your child’s special financial and educational needs
Considering Jasmina has already raised the subject of preschool, she takes Sébastien’s education to heart! Financially, it has been especially wonderful for them to be able to apply to the David Foster Foundation. David and Jasmina have never been afraid to apply to foundations… after all, isn’t that what they’re there for?

Don’t be afraid to ask for help
Considering that people are almost always willing to do anything, makes the asking a bit easier… At SickKids the parents on the ward will tell each other when they’re going shopping, and the favor is always returned.

Schedule and spend special time with your spouse and other children
David, Jasmina and Sébastien enjoy to the fullest the occasional outings with cousins, family members and friends around Toronto. Jasmina always strives to have Sébastien interract with other children, as much as his condition allows.

Being a parent is one thing, and being the parent of a child recovering from a transplant is another. Priorities change and “normal” takes on a whole new definition. It takes courage and patience, and David and Jasmina are fine examples of it.

Good sleepers are made…

“The nurse is making noise and my baby is sleeping!” Jasmina says in a voice that betrays just a little amusement. After all, how much can one expect from the noisy hospital staff who must take care of the noisy machines that beep and blink for their usually active patient. I’m used to such casual comments during a phone conversation… “I try to get Sébastien to nap during the day.” Jasmina tells me. “I find he doesn’t get enough sleep, and it’s important! They grow and get better when they sleep. So now, everyone knows… at 1:30, it’s his naptime.”

“Oh! Hi Fr. Peter!” she nearly whispers, and I go quiet as I try to imagine what the new visitor looks like. No one could get upset for the interruptions in the phone conversation seeing as Jasmina has the patience to attend to the many daily visitors that are all well-meaning.

I go for lunch, while her and Fr. Peter have a prayerful visit. From the table of the staff kitchen, I pick up the Globe and Mail, the paper I prefer, just like my dad. I glance over the headlines before stopping to read my favourite section: Facts and Arguments on the same page as Social Studies.

Most three-and four-year-olds, writes Marguerite Kelly in The Washington Post, “need about 10 to 12 hours of sleep out of every 24 hours to keep their disposition sweet, to give them a lot of energy and to grow a little taller, too. Studies tell us that children do most of their growing when they’re sound asleep.” To give them easier sleep, she advises outdoor exercise and staying awake between naptime and bedtime. “Good sleepers are made, not born.”

I smile. The Washington Post has just confirmed the motherly instinct.

The importance of talking

“Sébastien should know what is going to happen…” Jasmina said.
“For sure!” I agreed.
“Even if a child can’t respond when you talk to them… I find Sébastien is more calm when he knows that he’s going to be poked, or whatever. I always tell him. I don’t want to hide it from him or distract him.”

The conversation we’d had over the phone came back to my mind when I read a quote from the Toronto Sun special edition.

 We empower the kids with knowledge about their ailment. Knowledge equals control. They can manage when there are no surprises. (Erin Boyle, child life specialist)

And it is true! Ace Burpee often said to the child he was interviewing, during the Children’s Miracle Radiothon in Winnipeg, “You know too much!” And usually the child would laugh shyly, no doubt proud about the compliment. En passant, the radiothon raised a record 600 000$ this year. The money will help the Children’s Hospital here to pay for two reverse dialysis machines. More on that in another post!

Today begins the 21st annual SickKids Radiothon in Toronto. For those who are able to listen in via their computer, a live interview with Jasmina and Sébastien will be aired around 10:00 am on Thursday. More details here.

Quote of the day

“Call them what you will — rituals, routines or almost-superstitions — these patterns impart the sense that your day will go well, that there’s a cause-and-effect relationship within your power to influence,” writes Connie Midey in The Arizona Republic. “If not taken to extremes, they can even enhance your physical and mental health. . . . Studies by Barbara Fieseof Syracuse University and other researchers have shown that the security of following such routines can reduce stress and promote overall well-being. Kids expected to do chores, join family meals and go to bed at regular times, for example, experience fewer respiratory illnesses, Fiese found.” Believing you must apply lipstick before leaving your bedroom, putting your clothes on in a particular order or drinking a morning latte, “is pretty normal,” says Michael Shermer, a former psychology professor and founder of the Skeptics Society.

Who knew schedules could help kids avoid respiratory problems?