Monday, December 31, 2007

Is ROP on the rise?-A Denmark Study

Treatment for Retinopathy of Prematurity in Denmark in a Ten-Year Period (1996–2005): Is the Incidence Increasing?

Carina Slidsborg, MDa, Henrik Bom Olesen, MDa, Peter Koch Jensen, MDa, Hanne Jensen, MD, DrMedScib, Kamilla Rothe Nissen, MD, PhDa, Gorm Greisen, MDc, Steen Rasmussen, MScd, Hans CallΓΈ Fledelius, MD, DrMedScia and Morten la Cour, MD, DrMedScia,b

a Departments of Ophthalmology
c Neonatology, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark
b Department of Ophthalmology, Copenhagen University Hospital, Glostrup Hospital, Copenhagen, Denmark
d National Board of Health, Copenhagen, Denmark

OBJECTIVE. The objective of this study was to analyze the population incidence of retinopathy of prematurity treatment in Denmark in the 10-year period from 1996 to 2005.

METHODS. Patient charts of infants treated for retinopathy of prematurity and the national birth registry provide information about neonatal parameters. These parameters, along with birth in the latter half of the period (2001–2005), were analyzed as risk factors for retinopathy of prematurity. The national registry for blind and visually impaired children was accessed to obtain information about visual impairment attributable to retinopathy of prematurity in both treated and untreated infants.

RESULTS. The study population consisted of 5467 Danish preterm infants born in 1996 to 2005, with a gestational age of <32 weeks, who survived for ≥5 postnatal weeks; 2616 were born in 1996 to 2000, and 2851 were born in 2001 to 2005. The incidence of treated retinopathy of prematurity cases increased significantly from 1.3% in 1996 to 2000 to 3.5% in 2001 to 2005. Significant risk factors for retinopathy of prematurity treatment were low gestational age, small for gestational age, male gender, and multiple birth. Other, yet unknown factors contributed to the increased incidence in the latter half of the period. Of the study population, 0.6% were registered as visually impaired because of retinopathy of prematurity within 2 years after birth (early-detected visual impairment). The incidences were not significantly different between 1996 to 2000 and 2001 to 2005. Of all of the early-detected, visually impaired children, 16% had not been treated for retinopathy of prematurity and were considered screening failures.

CONCLUSIONS. The incidence of retinopathy of prematurity treatment in Denmark has more than doubled during the past half-decade. This increase could not be fully explained by increased survival rates for the infants or by changes in the investigated neonatal risk factors.

The above article can be found here.

Sunday, December 23, 2007

Merry Christmas To Me!

I was given a gift today, a gift that I have longed for since Paige was in the NICU for her first Christmas

Hovering over her incubator my thoughts ran a mile a minute. My baby wasn't supposed be born yet. Why did she have to be stuck in a plastic box instead of being home waiting for Santa? People were decorating their trees, shopping, wrapping presents and making cookies. We couldn't bring ourselves to enjoy any part of the holiday. I can't wait to bake cookies with you sweetie.

Over the past 9 years I have tried, quite a few times, to bake cookies with Paige. Something always happens (attitude problems, feet hurt, hands hurt, etc) that prevents us from finishing the cookies without a huge argument or meltdown (mommy meltdowns too).

I gave up a few years ago. It wasn't worth my sanity or jepordising my, already strained, relationship with her.

A few days ago hubby and I were at the grocery store (while Paige was visiting Grandma) when we decided it may be time to try to make cookies with Paige. I was willing to give it a go and grabbed a package of mix. Using a mix would cut down on the prep time, thus lessoning the likelihood that the project would end early.

Hubby had a different plan. He wanted to make them from scratch. Not just one kind either... chocolate chip AND sugar cookies to decorate. Icing and all. And by "he", he meant Paige and I making them.

This morning her and I got all set up.

We started to combine all of the ingredients and then we headed to the counter to use the beaters. She wasn't happy about having to use them and had me turn them on while she covered her ears. In the past, that very step may have ended our project.

Not this year.

Look at her go!! Woo Hoo!!

Not only did we make cookies, but we had FUN!

Paige and I made the sugar cookies...

Daddy and Paige made the chocolate chip cookies, complete with egg juggling too!

Just as Paige and I were getting ready to cut out our 2nd round of sugar cookies, she lost interest.

Playing in the flour was much more fun than cutting out 20 more holiday shapes. In the past I would have been upset. Today, I focused on watching her enjoy the flour and remembering how much fun we had making cookies. Thank you sweetie for making cookies with mommy.

Tonight, after putting tornado Tyler to bed, Paige, Daddy and I curled up in our bed to watch our annual Christmas movie... A Christmas Story. Part way through the movie Paige got off the bed and told us that she would be right back. 15 minutes later she came in with a cookie. A decorated cookie! My little angel got out all of the decorating tubes, icings and plain cookies to decorate a cookie for me. The tears. Oh boy were there ever tears!

9 years ago I watched my tiny girl spend her first Christmas hooked up to tubes and wires, waiting for the day that we could enjoy Christmas traditions. Today I spent the day staring at my big girl, watching her smile and listening to her beg to lick the beaters.

My heart is full today.

Tuesday, December 18, 2007

A Request From Helen

Dear Readers,
I know this isn't a good time of year to ask anyone to do anything, but I'm up against a deadline myself. I've contracted with a medical journal for an article on improving informed consent among parents whose children are born in the ethical gray area below 26 weeks gestation. It needs to be in Jan 1, and I still haven't done any Christmas cards! Nevertheless...

I would be interested in suggestions any of you have about ways to improve the informed consent process especially prior to delivery.

My own thoughts are that we need to:

1) start in the media (no more unchallenged "miracle baby" stories)

2) extend this to high school biology and "family life" classes, with comprehensive coverage about what is and isn't possible, biologically, at various gestational ages

3) mandate counseling for fertility treatment couples about the risks they are taking (this counseling would not be given by anyone with a financial stake in promoting fertility treatment)

4) require handouts from OBs/ child birth instructors giving comprehensive information and options for each gestational age along the lines of "If your baby is born at X weeks, here is what s/he will be like, here are the risks and probable outcomes... here are your options..."

5) allow prenatal advance directives that give each couple a chance to discuss and think about the issues at home, on their own (away from the pressures of high-tech medicine)

6) promote a frank admission by the medical community about the "experimental," highly painful, and damaging nature of treatment of babies below 26 weeks

7) promote a frank discussion of the economic, marital, and health consequences for the family following the survival of an extremely preterm child

8) promote a frank admission about the resuscitation and treatment policies of each hospital -- a sort of "truth in advertising" --that would let parents "vote with their feet" and choose a hospital whose policies are more in line with their wishes

9) perhaps offer a physically separate facility for delivery and palliative care for parents who do not wish resuscitation so that families don't have to confront NICU technology and the attitudes and imperatives for its use that accompany it

And in the NICU:

We need to promote parental participation in rounds and charting, taping of important conferences, etc. (parents should have the same understanding of what is going on as the staff!!!)

In society at large:

1) let's have universal health care (stop the financial incentives of hospitals to mandate care that pushes the margins of viability despite parental wishes); and while we're waiting, perhaps insurance companies have a role to play (Blue Shield, for example, has drawn up a fairly good information sheet on <26 weekers)

2) and life-long follow-up for all NICU grads

3) as well as realistic funding for the needs of families of children who survive the NICU with handicaps

If "society" wants to require everything be done for every baby all the time, they need to help pay for the consequences. So far, "society" has been incredibly unwilling to do so.

I'd like to hear what you think.

Thanks in advance for any help you can give.

Helen Harrison

Saturday, December 15, 2007

Where is Tyler?

Last week was strange.

It was calm.

My father in law and his wife were headed our way, bringing our niece, to celebrate an early Christmas. I had worked fairly hard getting the house ready and was actually ahead of the game (normally I really race to finish at the last minute). I just had a few last minute (but very time consuming) things to do.

Too calm.

It's Thursday afternoon and I'm on the couch, with my laptop, doing some much needed research. (does playing scrabble on Facebook count as research?). I was trying to get it all done before I had to leave to pick up Paige from school. Tyler was playing his usual game of "can I hit the keys before mom can block my hand". About 2 minutes into my game I realized that Tyler had stopped playing his "laptop game".

Where is Tyler?

We have an open floor plan in our house. I can see the entire first floor from where I am sitting. Well, almost all of it.

Where is Tyler?

I put the laptop down, fully expecting Tyler to come charging in to beat me to the keys.

Where is Tyler?

I head off to the only spot that one sneaky toddler could be hiding, behind our love seat (which is not against a wall).

There he was, big yellow Nerf football in hand. Big yellow Nerf football with a huge chunk missing. I did a quick check of the floor. Only crumbs. I grab Tyler and fish the chunk out of his mouth.

Off to go get Paige.

After we are back at home I place the piece back on the football to show Paige. Wait. There is more missing. Nowhere to be found. Since it was only a small piece (smaller than a pencil eraser), I didn't worry. I call hubby and we both proceed to surf the internet to find something to reassure us that his Nerf snack is non toxic.

After an hour of on and off of unsuccessful searching I shoot off an instant message to some of my fellow bloggers and doc bloggers and go back to cleaning for our visitors. When I hear back from a trusted source that I shouldn't be taking this snack fiasco so lightly, I call the doc who tells me to go straight to the ER at the children's hospital. His concern was that the piece could cause a blockage. He said to get an xray and then we could be on our way.

Sound simple?

I thought so too.
We arrived at the hospital (with football) a little after 6pm.

2 hours in the waiting room filled with sick kids. (We sure were happy that we didn't have Paige with us-thank you Grandma).

1 hour back in a room waiting to be seen.

(Doctor finally comes in and proceeds to tell us that Tyler needs xrays on his lungs-not his intestines-because of the risk of aspiration. I tell the doc that Tyler never coughed or choked. I question the xrays because he is satting at 100% and has good bilateral breath sounds. I said that I wanted to leave since the doc agreed with me that the piece was too small to cause a blockage. I finally give in since I realized that I was being doc mom and forgetting that I am really not a doctor. lol)

1 hour waiting to get the results from the xray

(Keep in mind that Tyler has not had dinner. I didn't feed him before we left in case there was a blockage. The hospital told us not to feed him either in case he needed surgery.)

1 more hour to wait for our turn for additional xrays that the doc originally ordered but were not done because the radiologist did not feel we needed them.

1 more hour of waiting for the results of the 2nd set of xrays.

5 minutes listening to the doctor tell us that Tyler was fine.

We spent 6 hours in the ER!!

Thankfully the hospital has a McDonald's on site that is open 24 hours. We all ate and then headed out for our 45 minute trip home, which took well over an hour because of ice.

I got about 3 hours of sleep and then was up getting my house ready for the visitors that would be arriving that day.

I wish I could have trusted my mommy instinct which was telling me to not go to the ER. The piece was so small and if it was going to cause a blockage, there was nothing we could do about it until it happened.

Lesson learned.

Tuesday, December 11, 2007

Settling In

It goes without saying that our lives changed when Paige was born (at 25.5 weeks for those of you who are new). Hospitals, doc visits, meds, medical terms to learn, etc. The only thing that was consistent in our lives what the inconsistency.

When Paige was 4 I joined an on line group for parents of older preemies. At the time I needed help with the public school system and the parents on the list were full of very helpful advice. One feeling that I took away from the "been there, done that" crew was a sense that they had settled into their lives. They had gotten to know the doctors well, were used to IEP's and had accepted (but not given up on) the alphabet soup (ROP, MR, DSI, SD, BPD, CP, etc) that their child was dealt. I remember being so envious at how calm many of them were and couldn't wait to get there myself.

9 years has passed since Paige was born and I still don't feel calm. Inconsistency still rules our world. Just when we think we are on the path to consistency, more letters are added to the already full bowl of alphabet soup.

I'm still waiting for the day when we can all settle in.

Wednesday, December 5, 2007

Alternative Therapies

I would like to start a new series of topics that explores the alternative therapies that we use on our preemies. There is so much information on the internet about various ways of helping our little ones and, to be honest, *I* believe that most all of it is false. I will admit that we have shelled out tons of money in pursuit of "fixing" the long term issues related to prematurity. We are now in the same place as we started.

My goal in the upcoming discussions is to talk (openly and honestly) about each alternative therapy, individually. This way, those parents who are seeking information can read comments from parents who have "been there, done that". And, even if you have not tried the alternative therapy but know of research, please speak up.

It's going to take me a bit of time to get this started. What I'm asking of you all today is if you can EMAIL me, or post in the comments section, what alternative therapies you would like to see discussed.