Retinopathy of Prematurity (ROP)

What is it?Finisterre.minti.com

Retinopathy refers to damage to the retina, the light-sensitive membrane lining the back of the eye which is responsible for transmitting images to the brain.

In order to function, the retina requires a network of blood vessels. This blood supply normally develops during pregnancy starting around week 16 and finishing by 36 weeks. If a baby is born prematurely, with the retina’s blood vessel development incomplete, problems can occur. Abnormal blood vessels may develop which can subsequently lead to bleeding and scar tissue formation. In severe cases this may then stretch the retina, pulling it out of position. ROP normally affects both eyes.

Regardless of the gestational age at birth, ROP seems to occur at about 37 to 40 weeks.

Who is at risk from ROP?

ROP mainly affects babies who are born at less than 32 weeks gestation weighing less than 1250 grams. The smaller a baby is at birth, the more likely that baby is to develop ROP. However in over 90% of cases, the ROP is mild and will resolve without treatment.

Other factors contributing to the risk of ROP include anaemia, blood transfusions, breathing difficulties, and the overall health of the baby.

Traditionally high oxygen exposure was believed to be the main cause of ROP, and it was common in the 1940s and early 1950s when hospital nurseries began using excessively high levels of oxygen in incubators. With newer technology and methods to monitor the oxygen levels of babies, oxygen use as a risk factor has diminished in importance.

Why is it a problem?

Most babies who develop ROP have a mild case (referred to as Stage 1 or Stage 2) which does not require treatment. These babies recover completely and the ROP leaves no permanent damage.

However, in a small number of babies, ROP worsens, sometimes very rapidly. If left untreated in more severe cases (Stages 3-5), ROP is one of the most common causes of vision loss in childhood and can lead to lifelong eyesight problems and in very severe cases, blindness. The singer Stevie Wonder was a premature baby who became blind as a result of ROP.

How is it treated?

Premature babies have their eyes checked while they are still in hospital, and again after they have been discharged. Mild cases do not need treatment as they will correct by themselves. If the ROP does not resolve by itself, it will continue to form scar tissue which may threaten to detach the retina. Early detection and treatment (if required) reduces the risk of severe ROP developing.

The usual treatment in Australia for severe ROP is laser therapy. Doctors use lasers to “burn away” the outer edge of the retina to slow or reverse the abnormal growth of blood vessels. Unfortunately, this treatment also destroys some side vision. This is done to save the most important part of a baby’s sight—the sharp, central vision needed for “straight ahead” activities such as reading and driving.

Are there any long term problems if my baby had ROP which resolved?

Babies who had ROP are considered to be at higher risk for developing certain eye problems later in life, such as retinal detachment, nearsightedness, crossed eyes, lazy eye, and glaucoma, but in most cases these eye problems can be treated or controlled.

This is one of a series of articles I’ve written for the L’il Aussie Prems newsletter under the heading of Premmie Health. Read my disclaimer here.

Pre-Eclampsia Awareness Week

I just discovered that this week is Pre-Eclampsia Awareness Week.

I had never even heard of pre-eclampsia until a friend of mine told me it was the reason she needed to have her baby delivered 8 weeks early, four years ago. To be honest, at that time I didn’t have any idea what she had been through. Since my daughter was born I’ve met a lot more women who suffered from this very serious and sometimes life-threatening medical condition and whose babies were born prematurely as a result. In fact even two friends in my new mothers’ group who were able to have full term babies also suffered from pre-eclampsia in the late stages of their pregnancy. It’s a lot more common than I had previously imagined.

The Australian Action on Pre-Eclampsia (AAPEC) has a website at http://www.aapec.org.au with a good FAQ and stories from people who’ve been through it personally.

Photographing and scrapbooking your NICU experience

I love Talia’s NICU photos, looking back on them now. I wish I had more of them, and I really wish I had some video. I don’t think I realised at the time how important they would become, because when I was spending so much of every day in the nursery, I felt as though every detail would be burned into my brain forever. Unfortunately, you do start to forget the little details so every photos is precious - especially the size comparison photos, and the few of me holding Talia. Sadly I lost a lot of my hospital photos last year due to a computer failure - so be sure to create a back up of any photos you take.

I know there are mums who can hardly bear to look at their hospital photos, showing their baby looking so small and struggling to hold on to life - but it is better to have the photos and choose not to look at them, than not to have them at all. One day your child may also want to know more about how their life started and how amazingly far they have come.

The KEMH nurses were quite good at giving me little items to keep - things like hospital bands, a tiny blood pressure cuff, monitor leads, the little paper tape they use to measure head circumference and so on. They also made me a card for Mothers Day with Talia’s footprints in it, and so forth. All these precious little souvenirs are in a special memory box which I dip into from time to time.

I’m not really a scrapbooker, although I’ve done a bit of digital scrapbooking. However I know a lot of people like to create baby pages, and if you want something special, here is a site which offers stickers and other scrapbooking stuff specifically for premature babies. http://www.mykidsinspiration.com/shop/index.php
The only drawback is that they call premmies “preemies” in the US.

The photos in this post are a couple of my digital scrapbooking pages, they are part of a photo book I made of Talia’s first year. (They don’t actually use anythings specifically for prems, other than my actual photos.) You can see scrapbooking done by other premmie mums on the L’il Aussie Prems forum here.

Swings and slides

I think some days it is too easy to worry about your premature child, especially if they have had problems with their health at some point, and not give them the freedom to take the sort of risks other parents might take for granted.

My husband and I are not Olympic medal material. We were the sort of kids who always got picked last for school sporting teams. In spite of this, we’d really like Talia to be a life-be-in-it, have-a-go sort of child. Given her genetic inheritance and her prematurity, we figure it will take a bit of effort on our part to help her gain the confidence and the skills that we seemed to miss out on. So we’ve started by giving her experiences in the playground beyond what she might get if we worried too much.

Fortunately for us, she loves it! The swing is a daily delight and she shrieks with happiness as we push her until the chains of the swing are flying out almost horizontally. (I give thanks to the person who invented the bucket swing for toddlers!)

The park has a few slides, including a straight one about 5 foot high. Talia tolerated going down the slide on her bottom while holding my fingers. Then a couple of days ago I decided it might be interesting for her to go down on her tummy, feet first. It was slightly frightening to let her go down by herself the first time I did it - but she was exhilarated and couldn’t wait to do it over and over. Then she climbed back up the face of the slide, for the first time ever - and right up to the top at one point!

As you can imagine, she was very pleased with herself, almost as proud as I was!

At this rate it will be no time before she’ll be in the front carriage of the roller coaster at the show with her eyes open and both arms in the air. If my hair isn’t grey by then no doubt it will be soon after!