Question for Parents of IUGR Babies

[konayossie]

DS had IUGR (due to placental problems--pathology reported that it had had been infected). He was 4 lb 15 oz at 38w5d when he was born. At 18 mos, he is now 19 lb 11 oz, so he has done fine in terms of doubling and tripling his weight, but obviously he's never had good "makeup" growth. He has always remained in the 1st percentile for weight, sometimes breaks into the 10th for height and HCF. He still loves his mama milk and is just not much of an eater otherwise. He's not really picky (mostly)--he just doesn't have a big appetite.

So, the pedi who has been very laid back all along about DS's slow gain and low stats said today that he would probably look at referring us to a growth specialist if DS has still not had a major growth spurt by the time he's 2. He said we would talk about growth hormone at that point. I did some googling, and I see where HGH is prescribed for some IUGR babies who do not experience makeup growth. Just wondering if anyone has experience with this. The thought of giving my little guy hormones scares me, and I will definitely be looking more into the "why"--is it just to get them to a "normal" size or are there other medical problems that the hormones are used to prevent/help?

Also, just a note: I don't think DS is "just" constitutionally small. The IUGR was confirmed, and although I was a skinny baby, I was never tiny like he is, and now I'm of average height for an American woman. DH is 6'2". The men in my family aren't tall, but none are under 5' 10".

Anybody BTDT and have advice?

[konayossie]

Nobody else had a baby with IUGR??

[kasey08]

Hi! DD is now 27 months and sounds just like your son. She was born at 37 weeks weighing 4lbs, and just hit 20lbs this week. She's always loved to BF but was a late eater, and is doing okay now but just doesn't have the appetite of other kids we see. She doesn't look malnourished which is the most important thing to me - she is proportionate and healthy and I believe will always be smaller because of what went on during pregnancy. We have seen every type of specialist and therapist with no answers - everything is coming back good. From the little I know about growth hormones it would be more for someone with dwarfism or another genetic disorder that keeps them extremely short. It's not something I would consider. If my kid is the shorter one in her class, that's fine. I guess it's all a matter of personal choice too - I think my mainstream mom would beg the doctor to give us growth hormones if it meant we could be 2 inches taller in the longrun.

[konayossie]

Thanks, Kasey08! I don't know anyone else IRL whose baby had this, so it helps to hear that there are others out there. The doctors all acted like it was no biggie once he was born and kept assuring me that he would catch up, so I'm guessing that's the more typical course.

I'm glad to know that your little girl is very healthy other than being small. I am definitely not asking for HGH; I'm just wondering b/c I had read some info on it in some medical literature (running searches for IUGR postnatal growth), and it was coming up there as well as the pedi mentioning it to me. I also am not willing to give him hormones just for the sake of (possibly) being taller if that would be the only purpose.

Thanks again for your response!

[Momily]

My 11 year old was IUGR and was born at about 38 weeks, weighing exactly 5 lbs. I don't have that many details as I adopted him a few weeks later, but I know that his IUGR was mainly in the early parts of the pregnancy, and he grew well in the second part. This is apparently pretty rare as most times when there IUGR in the first trimester it ends in a miscarriage. There were a number of issues both medical and social which made his pregnancy very stressful for his first mom, and I was told that was probably the cause of the IUGR.

Anyway, my son stayed small for the first 3 or so years of his life. There was some gradual increase in his height percentiles, but he was still off the charts, and the smallest in his 2 year old class, for example, despite being the oldest. His weight percentiles changed more, but that was because he had a feeding tube from ages 9 months to 2 years for reasons unrelated to the IUGR (he had a structural anomally which made it unsafe for him to eat by mouth), and the nutritionist we saw prescribed a lot of calories on the theory that it would help him grow. I was skeptical then (if more calories make you taller, where do short fat people come from?), and it definitely didn't work -- I ended up with a short round baby and toddler. I was told that his height percentile at age 2 would likely be his percentile at adulthood, which worked out to 5th %ile and about 5 foot 1 inch.

Anyway, around age 3 things started to change, and he began to catch up in growth. By Kindergarten he was average height. He's now 75th %ile for height, and big, built like a linebacker, plus he's got that preadolescent baby fat that many boys get before puberty.

I should add that he had significant asthma all the way through, and took some meds early on that can cause growth retardation, so that may or may not have played a role.

So, in our case, catch up growth came much later, and when it did he caught all the way up and may well end up on the tall side of average.

[konayossie]

Momily, thank you so much! It's great to hear from someone who's close to being on the other end of this! I'm really glad to hear there's hope for catch-up growth later down the road, maybe. Your son hasn't experienced any signs of early onset puberty, has he? I read that is another issue with the IUGR.

[Stella_luna]

My DD had IUGR. I had pre-eclampsia due to an autoimmune disorder I have, and owing to those issues my DD was born at 31 weeks weighing 2 pounds 8 ounces (at that gestational age, she should have been about 4 pounds) and 14 inches long. I had placental insufficiency as well.

At 1 year she was about 12 pounds. I think it was about 2 years old when she started being tracked on the "regular chart" (vs the "preemie chart"). She remained under the 5th percentile for another year or two. She did gradually get taller over the years, though, and now (at 8 years old) she is the tallest kid in third grade, in the 95th %ile on the chart last time she was measured (2 years ago). Still skinny, but my family is a tall, skinny bunch in general, so she looks just like one of us .

We knew she would not be genetically small--I am 5'11" and DH is 6'5".

I remember she was not a big eater either as a baby, and it used to worry me sick. I was always trying to get her to nurse more and pumped constantly so I could give her extra bottles too. But her doctor said not to worry and many IUGR babies are not big eaters. He was right and now I feel bad about trying to make her eat more. She now eats more than any other kid I've ever seen .

[konayossie]

Thank you, thank you, StellaLuna and the others who replied. It helps so much to hear about others' experiences (especially since it all seems to be working out for everyone)!!

[piccola]

My IUGR daughter was born 11wks early and weighed 1# 13oz, 13in long last July due to my placental abruption (unknown cause). Catch up growth has been good, she is caught up with gross motor skills but is lagging behind in feeding and talking. She has a big problem with textures and is still on only formula and purees - anything with texture makes her gag. She mumbles, but does not say any words. As far as the growth issues, we don't have any at this point but I know a lot of IUGR babies have them. You might want to check the Yahoo IUGR group - [e-mail] - I belong and everyone there is helpful and supportive. I've read plenty of posts from parents dealing with the growth hormone issue - and I think you'd find lots of stories there of those who have tried that treatment with their young children. Keep me posted and good luck!!!

[konayossie]

Piccola, So glad to hear your daughter is doing well. It sounds like her early life must have been very frightening for you.

Thanks so much for the link to the yahoo group--I had no idea there was one! I will definitely check it out, especially as we are TTC and I'm researching causes of IUGR that might cause a repeat in my next pregnancy.

[Stella_luna]

OP--If you are TTC, I would just like to recommend that you see a rheumatologist to rule out autoimmune issues (many of which, like mine, are asymptomatic but cause IUGR and other pregnancy problems). Mine was diagnosed in one visit with one bloodwork series.

[konayossie]

StellaLuna, thanks for the recommendation about the rheumatologist. I'm currently suffering from pretty severe Luteal Phase Defect (still nursing DS, so that's contributing) and in trying to correct that problem have discovered that I am a bit hypothyroid. I was never tested before, so I don't know that it was a problem when i was pregnant with DS, but I have read that thyroid issues can cause IUGR. I'll definitely ask my PCP about a rheumetology referral.

It's strange to me that none of the doctors I saw during the pregnancy or after have suggested doing any work to figure out if there was an underlying cause for the IUGR. They're all just like, "It was a fluke, don't worry about it..."

[kasey08]

Originally Posted by konayossie

It's strange to me that none of the doctors I saw during the pregnancy or after have suggested doing any work to figure out if there was an underlying cause for the IUGR. They're all just like, "It was a fluke, don't worry about it..."

Same here! I also worry about the chances of this happening in future pregnancies. It's really nice to read others who have been through this. Anyone I've told in real life seems to think it's just another term for "petite" or something.

[ekh]

My first daughter was born at 38 weeks and 4 pounds 14 ounces. she is still small (she's 2 1/2 and in the lowest 10%) and skinny, but there are lots of small and skinny people in my family (not me, though!). The IUGR was also confirmed due to placental problems and pregnancy induced hypertension.
I was pregnant again 8 months later, and quite worried that my 2nd daughter would also be growth restricted. She was small, but 6 pounds, and nursed great. (My older daughter was quite weak and had a difficult time latching on at first.) She's skinny skinny too but taller. In any case, I didn't have a repeat of my problems in my 2nd pregnancy.