Any iugr babies + geneticist referral

[Fiestagal]

Hi, my son was born at 34+6 due to iugr and weighed 2lb 11 1/2 oz. He is doing well, feeds well and is gaining a decent amount of weight, although he remains off the growth charts. He is about 9lb at 5 1/2 months.

We had an appointment today with a paediatrician who wants to refer to the genetics team to rule out a syndrome. I think she is probably talking about Russell Silver syndrome, but he doesn't match any of the common features. He was clear for bloods for thyroid and growth hormone levels.

Has anybody had genetics testing/referral?

UPDATE at the bottom of the page.

 

[Marleysgirl]

Nope! (Sorry, thought you deserved a reply even though it's a negative) We know Andrew's IUGR (weights in signature) is related to my placental bloodflow problems, but what we don't know is what caused my problems.

However, I (and many others) would probably love to hear more about your little boy and his progress so far!

 

[Laura2919]

No but I hope you can find someone who has. and I agree with Marleysgirl. Would love to hear about your sons progress x

 

[Fiestagal]

Thanks ladies, I don't think Connor has RSS but just wondered what a geneticist referral entailed.

Anyway Connor was noticed to be on the lower growth centile at the 20 week scan, we were followed up with growth scans every 2 weeks and he continued on his curve. Towards the end of the pregnancy I was having doppler studies too which were always fine as was the fluid levels. I never had blood pressure issues either. About 30 weeks his abdominal circum really slowed down and his head circum continued growing. At 34 weeks his head growth and slowed and abdomen growth had stopped so I had steroid injections 'just in case' I started to worry a that point, this was the first time iugr had been mentioned although I had come across it earlier when googling for SGA. The aim to was to get to 36 weeks but no later, but my waters started leaking at 34+4. I was monitored to see if I went into labour, although the original plan was to have an elective section due to risks for Connor. I never went into labour and at 34+6 I was offered induction or section. I went for a section as my main worry was fetal distress as he'd had a few heart dips on the ctg when being monitored but I would be attempting a vbac and I didn't know if I would manage it anyway.

He came out screaming and had APGARS of 9 + 10. I was allowed to see him for a few minutes before he went to NNU, he didn't need any oxygen so they weren't concerned about rushing him there. After recovery I was wheeled to see him. He was in an incubator but i air, he had a long line in and a pulse ox monitor but nothing else, although he had a NG tube later.

He did really well and had his 1st bf on day 3 and from then he has been bf. He moved into the nursery on about day 4 or 5. He was in a heated cot for for a few weeks and needed to reach 4lbs but as he was doing so well he was allowed home at 3lb 10.

He has continued to feed well and now weighs nearly 9lb. He was born on 27.8.09.

 

[Fiestagal]

UPDATE

Connor had an appointment with a genetic consultant today to see if there is a reason for him still being small and not showing any catch up. They wanted to rule out Russell- Silver Syndrome which is a growth restriction condition. He has been fully cleared from that as he has no physical traits of the condition but the consultant expected him to have shown some catch up by now. He follows his own growth curve below the bottom (he is approx 14lb and will be 1yr in 3 weeks), his curve mirrors the shape of the other curves just lower down! His development is also behind but I'd always put that down to his prematurity, for example he has only now started to sit unaided, yet has been rolling for ages. (My daughter didn't walk until 20 months).

Anyway they now want to do some chromosome blood testing (microarray testing) to check nothing else is going on. I know they are being thorough but I was really hoping he'd be signed off from them today.

On the plus side Connor was a real flirt with the nurse and consultant, he was waving, laughing, babbling, and shouting!

 

[clairec81]

Hi there, I was also be v interested to hear how your son gets on. My daughter was born at 33 wks weighing 3lb. She put on good weight whilst in the NICU but slowed down after coming home. She has been put on high cal formula and a calorie supplement and does gain weight, slowly, but has never had the 'catch up' weight they hoped she would have. She had a dietician who doesn't seem too concerned but she too is below last centile on her own curve heading up. She is currently 7 months old and about 11lbs. She isn't sitting unaided but seems pretty much on track for corrected age of 5 months. She is a really bad milk feeder and only takes the bare minimum but is improving with solids but it is constantly at the back of my mind that there could be something else going on. Your son seems to be doing great - i love it when Erin 'performs' for the doctors! Keep us posted and good luck.

 

[kayshablake]

im currently going through this im 31 + 2 weeks pregnant and my baby will be born one day this week via section due to iugr im very scared about it all x

 

[Marleysgirl]

deleted as irrelevant, I've just read that Kaysha has had her baby!

 

[Marleysgirl]

He follows his own growth curve below the bottom (he is approx 14lb and will be 1yr in 3 weeks), his curve mirrors the shape of the other curves just lower down! His development is also behind but I'd always put that down to his prematurity, for example he has only now started to sit unaided, yet has been rolling for ages. (My daughter didn't walk until 20 months).

Hi Fiesta, I'm totally intrigued that they are still searching for genetic reasons for your son's small size when our Paediatrician doesn't seem remotely interested in the reason for Andrew's IUGR, just his progress from birth onwards.

Andrew will be 1yr next week, and I'm having him weighed in two days, I reckon he'll be around 14lb too. (I'll let you know). He maintains his own curve on the growth chart, I've got printed versions of the charts for low-birth-weight boys and he's between the -3 & -4 SD curves.

His development is behind and that is partly due to his prematurity and partly resulting from his epileptic period. He's not sitting unaided yet, showing signs of wanting to but topples sideways. He's rolling like a good'un and is now capable of raising himself on arms & legs in a crawl position (but with no forward movement).

 

[Lottie86]

Findlay didn't have iugr but he had genetic testing done when he was about 8months old due to a variety of health problems including poor weight gain but his weight gain really is atrocious as he was born at 5lb 7oz and at 15.5 months old he now weighs 13lb exactly despite huge amounts of calories being pumped into him.

What is Connor's monthly weight gain like? Does he have a dietician to monitor his calorie intake?

 

[Kitty23]

Interesting topic. Poppy was IUGR I did have a doppler scan before the c section at 34 weeks and the blood flow to the placenta was fine, they had no idea why she stopped growing and Noah was doing fine.

I did come across RSS and she does have quite a few of the symptoms so I might have to talk to the paedictrican about it. But my DH is probably doing to diagnosed with Ehlers Danlos Syndrome soon and that has a 50% chance of passing on to his children and can also cause IUGR in babies with it. So we shall just have to see what happens xxx

 

[Fiestagal]

Marleysgirl - The older paediatrician consultants I've seen haven't been concerned (I don't seem to have seen the same one twice), but one of the younger ones initially sent him to be seen for RSS, which has now lead to further testing. I'm getting a bit fed up of with the need to find a label, my placenta was poor I was hoping that was reason enough.

I've printed the charts that you use to a bigger scale and his length as gone from half way below -5SD to right on the -4SD line, weight is between -3 an -4, head circum is actually on the 0.4th.

We are now waiting for a dietitian appointment as he has never had any input from them before. He puts on 3-5 oz a fortnight, but did 9oz the other time but none on the last weight in although he has just cut two teeth.

 

[Marleysgirl]

Andrew weighed in at 14lb this morning so he is still maintaining his own curve on the graph - he was -4SD, now he's between the -4 & -3SD. I find it easier to read these graphs than the one the Paediatrician uses, where Andrew's weights just float below the 0.4th percentile.

Am trying to rearrange the Dietitian appt but she hasn't called me back, annoyingly.