Hand to Hold's Official Blog: Written by Parents for Parents

When do you stop using your preemie’s adjusted age?

Since becoming a preemie parent, I think all of us have heard plenty of insensitive, ignorant or downright rude comments from people. The latest for me was when someone asked me, “so, what does he have?” after learning my 2 ½ year old is not walking yet. I am at the point where I think we all should start a blog called “The Stuff People Say,” except I would insist we substitute the word “stuff” with a certain expletive. Even though I have already made peace with the fact that my preemie has not caught up developmentally yet, it still bothers me when people say such things and once again I have to explain about his premature birth. I don’t know about you, but I am so tired of explaining!

In the beginning, it never bothered me. In fact, I was eager to tell people my son was born 11-weeks early because I was so in awe of all of our preemie’s incredible stories of survival. While my awe has done nothing but increase exponentially over time, my patience with other people is waning. It seems that now everyone either expects my son to be caught up or they just don’t understand how complex a preemie’s development is.

This is especially true with some of my son’s developmental specialists. We recently had him evaluated again for his gross-motor delay but this time by a top-ranked children’s hospital. They informed us they do not correct for age after a preemie’s second birthday. It is important to note that there is no consensus among professionals regarding correcting a child’s age for prematurity. Some don’t do it at all. Some correct into school age. However, most correct through two years. 

Furthermore, there is current thought that the amount of time your preemie needs to catch up is directly related to how many weeks he was premature. This newer formula takes the number of weeks your preemie was born early and multiplies it by 10 to give the number of weeks needed to correct for prematurity. Since my son was born 11 weeks early, we would correct for 110 weeks, or about 2 years and 2 months. As he approached that time frame, it would be expected that his developmental skills would be comparable to children of the same age, no longer accounting for prematurity. Regardless of what formula is used, he still has not caught up.

But, do you want to hear something truly awesome? At this most recent evaluation, in addition to his gross-motor delay, they also gave my 2 ½ year old a cognitive functioning score of 15-months. That was not so awesome. Then, a few weeks later, I was reading an alphabet book to him and he identified and said every single letter. He knows the alphabet already! You can show him letters in any order, and he knows them. Kindergarten here we come! Seriously, though, don’t let these standardized tests get you down if your preemie has not scored well. Every child is so unique, and amazing. Don’t let some test make you doubt that!

Only needs 1 hand to walk now!

Only needs 1 hand to hold to walk now!

So, according to most developmental specialists, I should not be adjusting my preemie’s age anymore. Honestly, I have not done so since he started daycare last year and I had to write a letter giving permission for my then 18-month old to be cared for in the “infant” room until he was strong enough to be with the toddlers. But, what I will continue to do until who knows when is I will still take into account his prematurity. I strongly believe that while we preemie parents stop adjusting our preemie’s ages officially at some point, we will never forget how far our preemies have come and what they had to endure to be here. We owe them that and I take back what I said about being tired of explaining my son’s prematurity. His story, and your preemie’s story, needs to be told.

Beth Puskas About Beth Puskas

Beth Puskas (NY) is a children's librarian and has one child, Benjamin, born by emergency c-section at 29-weeks after Beth developed severe preeclampsia in 2013. Ben also was born with a cleft lip and palate. He came home after a 68-day stay in the NICU and spent the next year having his cleft lip and palate repaired. Despite a global developmental delay, Ben is a thriving, happy, toddler who loves to laugh. Beth hopes to use her experience to help other families.

Comments

  1. Hey, Beth! I think the time it takes to catch up developmentally is exponential when babies are born before 30 weeks, because they have so many more challenges to overcome. My daughter was a 29-weeker, and she caught up around age 2. But, by the 10-weeks formula, my son should have been caught up by age 2 and 8 months. I didn’t stop adjusting for his prematurity until he was probably 3.5! And his development was very uneven. He could count to 20 at age 2, but he wasn’t running. So, I definitely think your son is such a champ, and I sympathize with you that you have to fight against so many people, including specialists, who don’t really understand your journey.

  2. Beth, I understand the frustration of adjusting ages and how uneven it all can be, like Summer described. My girls were 31-weekers and seemed to catch up by age 2, but now at age 7.5, we’re realizing that they actually are still a little behind on some motor skills, core strength, and balance. Nothing that was obvious enough to alarm our pediatrician when they were toddlers, but enough that it started to stand out among their peers who are riding bikes and scooters all over the neighborhood. Whether or not it’s all a product of their prematurity, we really can’t be sure. But it definitely is on my mind.

  3. Your son is amazing! My 32-weeker is now almost 5 months old and has physically caught up to his peers, though he is not close to rolling over or many of the other “milestones” others have already reached.

    For the sake of my own sanity, I’ve stopped telling well-meaning strangers about his prematurity. When people ask how old he is, I tell them the truth: 5 months. Because he looks like other 5-month-olds, they don’t ask further questions — and I don’t have to rehash his early arrival yet again, as it can be painful.

    My husband and I are tracking his milestones ourselves, working closely with his pediatrician, and know that he will achieve everything in his own time. He is advanced for a 3-month-old, but not advanced enough to be “caught up” to his actual age. So we’ll adjust for prematurity at home, but I don’t feel the need to adjust in public! 🙂

  4. Hi my i had two preemies, first one 3.5 pounds 33 weeks,hes now 14 did well, but the recent one 25 weeks at 1.5 pounds hes doing everything that they feed you with sorry bs that their not suppose to be doing, Im keeping it real here with you he was one of the first babies to come home meds free no issues well developing hes now 13 months and walking holding onto things talking etc Our theory beside our FAITH number one, is as parents love love love and do it your way! Dont take too much attention to what “others” say those same so called experts came knocking down on my door asking us how did you do it!Your baby is apart of you,and of course his/her daddy and no one else’s! All the best your doing fantastic! Miracles do happen!(they will always say all this for preemies but preemies are extremly intelegent whos counting here on perfection at least there here and well!)

  5. My child is 7, I have a masters degree in education, and I adjust the over 3 months that he was born. My brother doesn’t get it, however, this year in December, I stated his daughter was now 12 when her birthday is in April. I said “oh she’s 12, she should know how to sew herself by now and he’s like “she’s only 11 and will be 12 on April 11, she’s still so young.” I’m like “see the time makes a difference still when your children are young!” He is like “what?”

    Sadly, I think most of the general public is too narrow minded to ever adjust.

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