Next week on the Today program they’re doing a piece on premature babies. The following is a letter I’ve sent in:

Dear Today,
My daughter Miss E was born prematurely on the 29th of March this year, at 26 week 3 days gestation–for a premmie those three days make a huge difference–she weighed 426 grams. I had preeclampsia which had caused her placenta to fail and resulted in “Intra Uterine Growth Retardation” and her tiny size. No one expected her to survive birth much less cry, but she did. She was born kicking and screaming, scoring an Apgar of 9 at both 1 and 5 minutes.

The trip down NICU lane has been a long, rough one for my little girl lasting five months–seven weeks were spent ventilated and a further seven on CPAP, in her first week her skin was so fragile that it wasn’t uncommon for us to find little tears and sores on her tiny body. During her first weeks she was so unstable that simply changing her nappy caused her heart rate and oxygen saturation levels to drop to a point where she would turn white or blue and it would take almost half an hour for her to recover. For this reason I didn’t get to hold her for the first time until she was six weeks old.

Like all premmies she has “Chronic Lung Disease” a condition in which damaged lung tissue causes breathing and health problems. This is partially due to her prematurity and partially due to her unavoidable ventilation. Her CLD means that we have to be careful to keep her away from potentially sick people and children under five. Up until recently this has meant no trips out of the house, we didn’t take her anywhere there’s likely to be crowds and if we did venture out we’d take her in her “Bubble”–her pram covered by the rain shield. This may seem strange, but 1/3 of all premmies are readmitted to hospital in their first year due to colds and flu. Many of them end up back on CPAP or worse, being ventilated. We still avoid most places.

For a little girl no one thought would survive she has done remarkably well. Though she’s small (she currently weighs 4.85kg/10lbs 11oz at 7.5 months or 3.5 months corrected) and we have problems with feeding and potential developmental delays down the track we have been incredibly lucky. We still face years of doctors’ visits and the increased possibility of things like autism, developmental delays and behavioral problems things could have been much, much worse. As one of her nurses said recently “she’s about as small as they come and survive”.

I was very excited when I heard Richard say you were doing a piece on premature babies because there’s a huge misconception out there that premmies are just babies who were born a bit early and a bit small but are other wise “normal”. While this is sometimes the case, it is more often not true. Even the ones born “just a little early” (30+ weeks gestation) still face the prospect of brain bleeds and lasting illnesses and disabilities related to their prematurity while others.

Thanks for your time,

Well Ronan still isn’t walking. He is now 20 months old (17 months corrected)! We have been attending physio since he was 6 months old and it has been so helpful with reaching his milestones. His fine motor skills are just great and he has never had a problem with those, just when the body is involved that is when the slowness signs show.

Knowing that Ronan was born premature and may have milestone delay was one thing but to be told by our paed that he needed physio actually really upset me and made me feel like a failure. He was born early because of my body and now he faced these challenges. When you have a premature baby you have many feelings of guilt and it takes quite a while to get over these feelings so when we had to go to physio they all flooded back but not in the same sense. It was more a matter of feeling like i had failed him more than feeling guilty like i did when he was born.

At the time i thought that i was a bad mum and that i must be doing something wrong or not enough to help encourage him to reach his goals. It took a while for me to stop checking up on the progress of other babies around his corrected age as i learnt to realise that Ronan was going to do things in his own time. It took him till 8 months old (real age) to roll, 13 months (real age) to actually sit on his bottom, 14 months (real age) to crawl and he has been walking along furniture for many many months now. These days i take the light approach with how i deal with his setbacks and at times make light remarks that someone else’s baby will walk before Ronan. This is a much easier way to cope with other babies overtaking Ronan than getting upset and feeling like we are living with this everyday. Even though we are it is not a burden so why make it one is my theory.

A few days ago he started to walk forward. It had taken a long time to get him to walk forward as he was so used to walking sideways (which he did with furniture). He is starting to get his balance alot better now and in just 2 days he can almost walk just holding onto me with 1 hand. His balance is getting better everyday as he will be standing holding onto the lounge then will bend down to pick something up. I told his MCHN about this and she said that by the time he does decide to walk he will have fantastic balance and won’t be tripping over everything.

He now has a new trick that he likes to do called “walking on knees”. Ronan has always done his own thing and always finds strange ways to do them. For a long time he would scoot around on his back and slide across the room. He is that fast now that the back of his hair is always fluffy. It used to smell like burnt carpet but since he has been crawling it isn’t so strong anymore. No matter how much i wash his hair that smell is still there.

Whilst he has always been slow in the gross motor skills area we are grateful that he is a very smart cookie. He amazes us everyday with what he does and he is now understanding us when we tell him to go and do something. I know that he will walk one day but as always it will be within HIS time frame no one else’s.

It will certainly be strange the day he starts to walk and i just know we will be beside ourselves because it will be a matter of running after him from then.

Babies who are born early usually need extra time to catch up to their full-term peers when it comes to developmental milestones, and sleep is no exception.

Why premature babies take longer to sleep through the night?

Premature babies can take longer than others to learn the difference between night and day, especially if they’ve been in a special care baby unit (SCBU), and they may need frequent feeds for a long time. While prem babies don’t need to reach a certain weight before they can sleep through the night, they will need a few more weeks or months than other babies before they can sleep for longer periods of time.

What can I do about it?

If you help her learn healthy sleep habits from the start, your baby will learn to sleep through the night on her own. She’ll just need a little more time. The average full-term baby sleeps through by six months, although some do take longer. To work out about how much longer your child will need, add the number of weeks or months early she was born to that age and use that figure as a rough guide. Be patient. By the end of the first year, most babies will sleep for 10-12 hours at a stretch at night. For more ideas, see our article on how to get your baby to sleep through the night.

Article from Baby Center