To worry about my sons spine

[Logiclady94]

Hi all, just wanted some advice on whether I am being unreasonable to worry about my sons spine or not. He was born at 34 weeks in January, he only weighed 3 lbs 8. He had two weeks of no growth so that was the reason they decided to deliver him early.

Since he has started putting on weight the crease in his bum has gone into a Y shape. There is a deep dimple at the bottom of the crease in between and there seems to be a fatty lump under the surface of the crease.

He is almost 6 months from his due date and he is 6 months from his actual birth so he should be better at sitting up but he still leans forward and falls backwards like his spine isn’t strong enough. He is constantly leaning forward which makes him a very sicky baby 😓

I am getting really concerned that he has a form of Spina Bifida Occulta but as he was in and out of hospital from January to March surely something should have been picked up.

I would say that if you are worried, ask your GP. It may be something and nothing but better to check for your own peace of mind.

It needs to be checked out but spina bifida occulta is not always very bad. Both my cousin and myself have this and have minimal issues

A sacral dimple?

We’ve seen the GP this week and he says he has never seen a crease like this before 😕 he has referred it to a paediatrician, we had a telephone appointment scheduled for September. My concern is that they seem to leave everything too late when it comes to my sons health.

The hospital discharged him from NICU after 10
Days, he only weighed 3 lbs 12 and he got readmitted 4 days later for his temperature. He was discharged after 5 days and then he got admitted 2 days later because his stomach swelled up and he couldn’t breathe properly.

They kept him in for a week and starved him to see if it was his stomach. He was discharged and within 3 days it had swelled again so we took him to A&E they consulted with LGI.

He was admitted to LGI in late February and they did a biopsy which confirmed that he didn’t have hierscprungs (a fault in the bowels and intestines) He was still in this hospital by his due date (22nd Feb) and for some reason after the biopsy he had continued to put on weight and his bowels were apparently stronger. They just said nothing to worry about and he just needed more time than they discharged him.

My concern after researching Spina Bifida is that it can affect the bowels so what if this whole time he has actually had this instead and that is what he cannot sit up straight yet and roll over

He has a very deep dimple at the bottom which researching could be a sacral dimple but they can cause problems too.

@clairethewitch70- Sorry do you mind mentioning what kind of issues so I know what I could be looking at? I have a daughter who is 14 months older (she was supposed to be 16 months older) so if he requires extra care I need to at least have an idea

He has a very deep dimple at the bottom which researching could be a sacral dimple but they can cause problems too.

Sorry I cross posted with you, didn't realise the GP had examined him. Im sure the GP would have known a sacral simple though.

He checked the dimple and had barely anything to say. He just said he was referring to a paediatrician and now I am panicking

Hi OP. I’m glad you’ve been referred. This is what I found from the Spina Bifida Association:

Spina Bifida Occulta is the mildest type of spina bifida. It is sometimes called “hidden” spina bifida. With it, there is a small gap in the spine, but no opening or sac on the back. The spinal cord and the nerves usually are normal. Many times, Spina Bifida Occulta is not discovered until late childhood or adulthood. This type of spina bifida usually does not cause any disabilities.

There are forms of Spina Bifida Occulta that do cause problems. They are:

Lipomyelomeningocele and lipomeningocele—this is like a tethered spinal cord, except it is attached to a benign fatty tumor

Thickened terminale—the end of the spinal cord is too thick

Fatty terminale—there is a fatty lump at the inside end of the spinal cord

Diastematomyelia (split spinal cord) and diplomyelia—the spinal cord is split in two, usually by a piece of bone or cartilage

Dermal sinus tract (with involvement of the spinal cord) the spinal canal and the skin of the back are connected by what looks like a band of tissue

Spina Bifida Occulta is the mildest type of spina bifida. It is sometimes called “hidden” spina bifida. With it, there is a small gap in the spine, but no opening or sac on the back. The spinal cord and the nerves usually are normal. Many times, Spina Bifida Occulta is not discovered until late childhood or adulthood. This type of spina bifida usually does not cause any disabilities.

There are forms of Spina Bifida Occulta that do cause problems. They are:

Lipomyelomeningocele and lipomeningocele—this is like a tethered spinal cord, except it is attached to a benign fatty tumor
Thickened terminale—the end of the spinal cord is too thick
Fatty terminale—there is a fatty lump at the inside end of the spinal cord
Diastematomyelia (split spinal cord) and diplomyelia—the spinal cord is split in two, usually by a piece of bone or cartilage
Dermal sinus tract (with involvement of the spinal cord) the spinal canal and the skin of the back are connected by what looks like a band of tissue

Spina Bifida Occulta is the mildest type of spina bifida. It is sometimes called “hidden” spina bifida. With it, there is a small gap in the spine, but no opening or sac on the back. The spinal cord and the nerves usually are normal. Many times, Spina Bifida Occulta is not discovered until late childhood or adulthood. This type of spina bifida usually does not cause any disabilities.

There are forms of Spina Bifida Occulta that do cause problems. They are:

Lipomyelomeningocele and lipomeningocele—this is like a tethered spinal cord, except it is attached to a benign fatty tumor
Thickened terminale—the end of the spinal cord is too thick
Fatty terminale—there is a fatty lump at the inside end of the spinal cord
Diastematomyelia (split spinal cord) and diplomyelia—the spinal cord is split in two, usually by a piece of bone or cartilage
Dermal sinus tract (with involvement of the spinal cord) the spinal canal and the skin of the back are connected by what looks like a band of tissue

www.spinabifidaassociation.org/resource/occulta/

I’m just wondering what this means for his development... what if he never sits or walks, what if he has bowel problems for the rest of his life or what if he has learning disabilities or is affected mentally by it 😭

We went through so much stress to get him here, scans that always ended in something else being monitored and something else being referred to a consultant. They told us he had a 1 in 41 percent chance of having Down syndrome and we did the further testing which came back okay but ever since the 12 week scan happened I have been worried that there is actually something physically/mentally wrong with his development.

I don’t know if my MH would be able to cope with looking after a child who would require more care. The last 2 years have been awful since I got pregnant with my daughter. I had gallstones which were left undiagnosed, I lost so much weight, became afraid of food.. it affected me in labour with my daughter because I was too scared to feel pain like a gallstones attack

My DP lost his job in June this year as a result of his performance being affected from the last 2 years so I/we cannot afford mentally for anything else to happen. My brain cannot take the load it has already

My dd had the same, a y crease and in fact 2 dimples.
Was seem by the paediatrician and they wasn't concerned.
She is 4 now and the crease is hardly there now, the dimples are still though but she seems absolutely fine.

DD2 was born with a sacral dimple. The doctors had to check her over before they would discharge and then we had to go back when she was a few months old for a specialist to check her over. They were checking to see how deep the dimple was and if it was serious. She got the all clear.
The only issue was that when she had an explosive nappy, we had to really make sure we had cleaned her up well.
Hope all goes well with the paediatrician.

Referring for an expert assessment is necessary because a GP doesn't have the necessary specialism.

Your DS is well with the boundaries of "normal" for neither rolling or sitting. My DD that had silent reflux therefore spent the first 6 months mainly screaming etc didn't sit reliably unaided until 11 months and was late rolling etc. Another of mine didn't walk until 17 months.

Both are sporty now.

I totally agree your DS has been let down and the dimples need checking out and fast but his development isn't behind for the moment especially when he was premature and has spent a fair bit of time in hospital.

Please be kind to yourself

I am just worried that he isn’t able to sit yet at all.. it’s like the strength isn’t there in his spine and he is Nearly 5 months from his due date (22nd Feb) which means that from birth (10th Jan) he’ll be 7 months on the 10th August.

He doesn't actually sound like he is out of normal ranger for sitting up though

What is normal range for sitting up? My daughter was sitting up and reaching for things by 6-7 months. She was interested in being weaned and he has shown no interest at all, he barely licks a spoon if I hold it to his mouth

6-7 months for sitting independently and reaching for stuff and not falling is early.

The not being interested in food is understandable with his particular health issues.

I would write a long bullet point history of his health, hospital admissions, your concerns and the milestones he has reached and when.

Can you take your partner or a trusted family member/friend with you to the appointment.

Regardless a paediatric review would be beneficial for your DS and your peace of mind as it seems he has slipped through the net.

OP if he is only 5 months corrected then he may not be ready for sitting or weaning.
The two developmental stages are linked which is why baby-led weaning advocates weaning once a baby can sit independently. I don't think you should be concerned that he doesn't have an interest in food yet.
Also, he might have slightly delayed progress in sitting etc if he's had other battles to overcome due to his prematurity.

It's a positive step that you've been referred to a paediatric specialist to look into this. It's really not easy but in the meantime I think you need to try to stop catastrophising and googling worst case scenarios.

I think I am overly worrying because I understood that he was born that we should be going by his due date for developmental stages but people like the HV keep expecting things from him now which is making me concerned that there is something wrong with him.

They kept trying to feed him like he was a full term baby when he was born but he was so small that all it did was cause his stomach to swell. The HV said he should be weaned as he is 6 months from his birth but I am in right in thinking just because he was born earlier than what he should be should not mean that his digestive system and his developmental stage would be affected to wean him earlier than 6 months. He was due end of February and was born early January

If so that is a silly way of thinking, I keep going by his corrected age but no one seems to agree.

He did have battles to overcome. They said at 34 weeks he could latch to the breast and feed but with my dates being wrong he has more like 32 weeks and he hadn’t grown for 2 weeks prior to that so he could hardly do anything at all. He was about 3 months when he started to not look scrawny and see through

I had a premie, add it was advised by the health visiting team (I’m in Leeds) to go by actual age, rather than adjusted for weaning.

I was shocked, because I thought it was something that would definitely go on their adjusted age like weighing.

Hi OP. You've all had a tough year!

My dd is a 29 weeker. She was discharged and the final check over they found a deep sacral dimple. The face on the Dr made me panic and I started googling. She had an ultrasound scan a week or so later and it was fine.

She also was late at all physical developments. She didn't walk until about 20 months and we were under a physio for her hypermobility. I can't remember milestones like rolling etc but it would definitely be late! Poor kid crawled and couldn't lift her head up.

She is now 7. She is perfect with no last effects. She's is right on track with her peers. She went to nursery from 13 months as I had to return to work and she fitted right in with all the other kids her age-just tiny.

Do not panic. Which after the last 6 months is hard. But try and enjoy this time with your ds. It goes so fast

Yes, I also weaned early by neonatologists advice. But that was because she wasn't gaining weight on BM and then a high calorie formula. In hindsight the poor kid had silent reflux and was refusing to feed.

With weaning, I was told to go by actual age rather than adjusted too. So 6 months from birth.

I don’t know anything about spinal bifida, but I can tell you that your DS is well within the normal range for sitting. My DD2 couldn’t sit up independently until she was over 8 months old. She was fine - just a bit of a late developer. She’s now 8 and into gymnastics so it hasn’t held her back at all.

Can you get a private referral? It should be a lot quicker and will set your mind at rest. I had one for my dd for a sacral dimple, I was going out of my mind with worry.

Hi I have SB oculta .I am at the severe end though it was noticible at birth some. Children it is milder and not picked up on he could.also have. A tethered. Cord which might explain the y shape and simple,the paediatric department should send him for an MRI to diagnose anything. I know you are worried but try and take everything as it comes rather than thinking ahead and what ifs, hopefully his referral is quickk and feel free message me anytime.