Friday, December 21, 2007

The right hospital for your baby's heart surgery

When we found out that Wren was going to be born with a CHD we spent a lot of time thinking about whether to travel down to Stanford or stay with Seattle Children's Hospital Heart Center for his procedure. It was a hard decision because his prenatal diagnosis was not fixed and in fact was complicated shortly after birth. If we had been certain he would need a Norwood we may have flown to Stanford since we had heard good things about the success rates there. The advice we were given was that Dr Cohen is a great surgeon but Seattle Children's was not yet as established in terms of volume to take a chance.

In our case, things worked out very well staying in Seattle. Wren had a coarc and aortic arch repair and a cath procedure for his valve. We were very happy with the surgical team and received great treatment and support in the Cardiac ICU at Children's. We were 10 minutes from home so there was a huge benefit for our family and elder child and granny to stay home and keep us all sane.

Still, at the time it was a huge decision and I was frustrated with the lack of data on success rates at different pediatric heart surgery centers. I think I would have felt even more desirous of that data if I had read this article I received from LittleHearts on the difference in survival rates at centers of excellence in heart surgery:

The study shows that an infant's risk of dying in the hospital during or after their operation varied greatly depending on the number of each procedure performed that year at the hospital where they were treated. Mortality rates ranged from more than 10 percent to less than 1 percent for the arterial switch operation, and from more than 35 percent to around 10 percent for the Norwood procedure.

And the researchers conclude:

"For the more routine congenital heart surgery, outcomes are excellent everywhere," says Hirsch. "But when it comes to a child with a complex defect, it's important to send him or her to a center of excellence. And the parents of these children are often so overwhelmed by their sudden situation, it will be important to develop the systems and support that will help them get to the right place."

I hope this kind of support and these systems are developed quickly. Right now, the decision is shaped by the cardiologists (who makes a recommendation), the surgeons and the family who may or may not have the resources to conduct independent research to inform their choice. At our local CHD family support group we are frequently visited by families who have received a diagnosis and are trying to select a hospital for the surgery. They are almost always confused and seeking access to impartial and potentially life saving information.

Cardiologists are not without bias. They may believe their hospital program is able to perform surgeries well despite the better results elsewhere. Surgeons who want their team to become a center of excellence may try and persuade families to stay at local hospitals even though they have not (yet) achieved the reputation or experience of the centers mentioned. These factors need to be taken into account. Families who have chosen an institution may recommend it even though their child has a completely different CHD and prognosis. If data becomes available that will be a great step forward.

Now that there is added information to show the importance of Choosing the right institution there will be added pressure on families to make "the right" choice and perhaps added pressure on Insurance companies to cover inter state heart surgery referrals.

Here is the full reference to this article:
University of Michigan Health System (2007, December 20). For Babies With Heart Defects, Death Risk Is Far Lower At Most Experienced Hospitals. ScienceDaily. Retrieved December 20, 2007, from­ /releases/2007/12/071217092926.htm

Conversations with Wren who is just 1

"Hey Wren, what are you doing?" I ask
"Heeeeeee aaaaah" he replies.

"ghu ghu ghu ghu" he adds.
"Oh, dear, do you have the lid of Frost's vitamins?"

He notices I am typing and drops his 'toy' to come and pull on my pajama pants and cry to be picked up.

"Ok, ok"

We will go and read a book now. Wren likes the board books with big photographs and points to a ball, a banana and a few other things when asked "where's the Ball?". He points to TIGER if you ask where the kitty is.

His only real word is "Mah? mah?" which is his word for milk. He signs milk at the same time so I am sure that is what he means.

Josh says that he has a word for kitty and fish but I can't hear anything except intonation. "kitties????" = "oooeeees????"

Wren had his 12 month checkup with our pediatrician today and I shall post on that shortly.

Wednesday, December 19, 2007

12 month cardiology clinic

Wren had a Children's Hospital cardiology clinic this week. He had an EKG and upper and lower pressures, height and weight. The summary from Dr Lewin is that his heart condition is "stable".

The EKG and pressures were very easy since Wren was mesmerized by the bubbles Wendy was blowing and sat quietly. His EKG was normal which is supposed to show that his heart is putting out a usual degree of electrical impulse indicating it is not thickening due to the higher pressures in his left side. The pressures were good but still showed a mild gradient upper to lower. I think DR Lewin mentioned to his intern that if she listened at Wren's back she could hear turbulence in the aortic arch which "is that 6mm gradient". I am not sure exactly what that means. He said there was no sound from the valves which means they are not leaking. [leaking? I was thinking. Were you worried they might leak?]

Dr Lewin said that Wren does not need RSV shots and that they would probably not be approved this year because he is doing well.

His weight was 22 lbs and I want to say 8oz but it may have been more. His head was 47 and a half inches. I am a little concerned that Wren hasn't gained much weight since his 9 month appointment. He weighed 21 lbs 6oz then and was 75th %tile but based on the weight at clinic is is under 50th percentile this week. Dr Lewin said it might be because he is now so active (Walking a lot!) but it may also be due to the stomach flu he had for a few weeks.

The only frustrating part of the appointment is the ongoing uncertainty regarding Wren's prognosis. Dr Lewin was not at all clear about what we can expect. He would only say he is stable and doing well now and they want to see him in 6 months for a sedated echo. Actually, they will try a non-sedated echo but if he wriggles too much it will be sedated. They will be looking to see how the LVOT ridge is developing, whether it has increased or not.

It feels difficult to have no expectation about how Wren's heart is going to develop and what treatment, if any, he will require. Dr Lewin seemed to feel that there was some inevitable mysterious course that his heart would take and when I asked about low salt diet he said only that he didn't think any kids should eat much salt and processed food but that nothing we could do would "alter the course Wren's heart will take" or something like that. I tried not to insert ominous music at that point since everyone's demeanor was pleased and cheery. I guess this is the difference between Wren's CHD and a full repair.

Sunday, December 16, 2007

Wren is One: Twelve things Wren loves

I am compiling a little story about Wren at age 1. Here is a list of the things he loves most. Its my version of the 12 days of Christmas:

1) Being with his family. Wren loves me, Frost and Joshua. He follows me around the house as I do housework and is terribly excited when Frost wakes up, hooting and climbing on him. He likes being picked up by Joshua when he gets home and Joshua holds him up over his head so Wren can grab (and bite) the pull-up bar on the living room doorway.

2) Kitties. When Heather, the new babysitter, started watching Wren he was very sad. After the first morning with her she told me that he was only really happy when the cats came by. He crawls after them rapidly and is starting to learn to pet them gently. He still strokes their fur the wrong way and tends to pound them with the cat brush but he no longer leaps on them and digs his fingers in their flesh. He points to kitty pictures in his board books and is animated and chatters incomprehensibly about them.

3) Birds. When we are outside Wren scans the skies for birds. I recall that when Frost was small he had an uncanny ability to see fire engines. It was as if he had refined fire engine recognition down to a few key triggers and was far better at it than I was. Wren is the same with birds. When I take him out the carseat he cranes his head around and then starts pointing and hooting at the air, sky, trees. On careful inspection I finally see a roosting crow, a seagull on a pole or a distant aeroplane. Wren is convinced these are all birdies. At the zoo his favorite exhibit was the flock of crows which followed us to eat the baby-crackers he was dropping. Similarly, at baby-coop he loves the starlings and crows which come down to feed on the marshy field by the parking lot. He never tires of watching the crows in particular and is fascinated by pictures of owls.

4) Green Lego Bushes and minifigures. The fourth treasure for Wren is Frost's lego. This is usually off limits but sometimes Wren managed to get into Frost's room. Then he makes a beeline to the lego pices Frost has left on the floor. his favorie pieces to chew are the green lego bushes (which are rather prickly) and to bite the heads off lego minifigures which are particularly forbidden. At times Wren managed to dump all the lego minifigures from their carefully sorted boxes and then rushes and rumbles through them with his little fingers (one in his mouth and one in reserve).

5) Bubbles. Wren loves bubbles. Sometimes he says "pop" when he pops one. He sits on the floor and flaps his arms in the bubbles as they descend.

6) Noisy instruments. First thing in the morning Wren plays with toys in the musical instrument box which is by his crib. The room is still dark while he forages for noise in the box. He likes the rattles, the xylophone and the hand drum best but also enjoys whistles and bells.

7) His ball rolling toy. For his birthday we bought Wren an extension to his Rollipop. He loves this toy. Not only are there balls which roll with mysterious and interceptible slowness to the base but it can be knocked over, filled with non-rolling objects and reconfigured to produce multiple rolling stacks. Strangely, Wren finds the very shortest tower quick compelling and drops the ball in and collects it repeatedly.

8) Raspberries & cookies: Wren points at raspberries in the grocery store. He has eaten more than half a punnet at a go and gets excited when we stand near the raspberry bushes in the garden. Let me just say Wren loves raspberries. Frost also loves raspberries so there is some raspberry rivalry when they are in the fridge. Frost and Wren also like cookies. When I was baking christmas cookies for a cookie exchange Wren threw tantrums when I refused to open the cookie tin and give him cookies or cake. I was holding him in the kitchen and he would lunge forward out of my arms towards the tin or tray, pointing and hooting in case I was in any doubt. He normally is given arrowroot baby cookies but he prefers the all-ages variety.

9) Walks in the stroller. Even on grumpy cold days Wren enjoys going to walks in his stroller. These almost-freezing days we zip him up in his Bundle-me where he is warm even in his shoeless state. He likes to watch birds, dogs and point at things. When he is impatient on long walks he swivels sideways and tries to stand up. That's when I keep him happy with stroller snacks which he picks up carefully between thumb and forefinger and chews quickly with his mouthful of teeth.

10) Going down stairs. Wren likes going down the basement stairs backwards. This is an extreme sport for babies and although he would do this alone I have to be careful to stand behind him in case he lunges and plunges.

11) Playing pounce on the bed. Wren watched Josh and Frost play pillow-fight or "war" on the bed and now likes to join in. He stands up tall and then throws himself face first onto whatever is in front of him. He only does this on things that look soft and pillow-like: the quilt, blankets, pillows, cushions, a belly. Sometimes he misjudges and pounces clean off the bed and hits his face on the floor. Other times there is something hard under there or he pounces on my face or overshoots into the wall. So, this game is generally fun but laced with a little peril.

12) Shutting doors. Wren loves to close doors and gates. He does it decisively and likes to hear a CLICK. Then he cries or complains because he has shut himself in or out someplace and cannot get that door to open again. Since the kitchen cabinet door s are latched against him he cannot play with them as often but still tries to get in as soon as one is left ajar.

Sleeping In

This morning I got up before Wren for the first time. I got up at 7am and tiptoed in to check on him. He was lying on his side in his little bonds wondersuit puffing quietly. I have no idea why he decided to sleep in today. His night was not wonderful (waking at 3.30am and being unable to nurse due to his stuffy nose and then waking at 4.30am am and nursing a lot). Perhaps he was awake and quiet for that hour. I wasn't sleeping then either since Josh left Frost IN our bed last night which made everything too snuggly for me to get back to sleep. Oh, the wonders of night parenting.

Ah... I hear Wren now.