Difficult births and developmental delay

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I was just wondering how many of you whose children have undiagnosed global developmental delay also had difficult births. My DS1 has GDD but no apparent genetic condition or explanation for the delay, apart from his developing absence seizures and being on epilim (although that could be a symptom of the delay rather than a cause).

I had an emergency ceasar after being induced but DS1's heart rate was dipping for several hours on and off (whenever I had a strong contraction) before they decided to operate, the delay in doing so being partly because it was a freakily busy night in the delivery suite and there was no room for us.

On questioning the possibility of the birth having caused the GDD I have since been told by several hospital staff (neurologist, birth afterthoughts midwife and a professor at the miscarriage clinic) that although his heart rate was dipping on and off, it was never dangerously low for too long (they said up to a minute is supposed to be okay) there was lots of oxygenation in between (they showed me the trace)and that because he was fine at birth with Agpar scores of 10 out of 10, fed easily etc, with no apparent problems until several months later (when the fits and low muscle tone were picked up on)it was not the birth that caused it. DS1 also had good muscle tone initially and this was recorded.

I would just welcome your comments/advice on this - it has always bugged me that maybe the hospital staff are protecting themselves. Btw, his CAT and MRI scans showed no abnormality.

(Meerkats, I know your delivery was a difficult one which is partly what got me thinking again. Do too much of that...)

Hello,

Oh what you went through with DS1's birth sounds awfully familiar to my birth experience/comedy of errors (especially when the bed collapsed into a V shape with me in the middle of it!!).

Paragraph two in particular could have been written by me word for word (no time for epidural due to woman in next room having one, no anaesthetist on hand).

DS also had perfect apgar scores at birth.

I was told by a paediatrician some time later who I trust implicitly that his traumatic entrance to the world had nothing to do with my DS's developmental delay. I believe this to be true. I feel in my case again there were genetic (I was also regarded as being "behind" as a child and therefore got put back a school year) as well as pre natal factors at work here to cause this.

I would dearly like to know exactly why his delay (albeit "mild") occured but I'm not going to beat myself up over that any more (have done so for a long while now).

I leave you with this quote which has provided me with a degree of comfort, "Nature loves diversity, humans hate it".

With best wishes

Meerkats

P.S DS is doing fine at school, have statement review next month. Hopefully that won't be one for the diary.

Ds2's birth was a planned, calm, caesarian - so no link there. Even though we have a prelim dx of GDD, I suspect we are looking at a genetic syndrome of some sorts, just hasnt been diagnosed yet

Hi Pages

I have tortured myself on and off with this for years. DS is five.. his was a 'normal' birth but for me it was 'difficult'.. pushing for 2 and a half hours.. finally got him out naturally when they went to get venthouse. He was, by this time, showing signs of 'tiring' according to the monitors. When born he was a bit 'shocked and grunty'. (Using all their terms here which are forever ingrained into my mind!) He was bagged and masked and in my arms within ten mins.

However, his breathing deteriorated hours later - his stomach distended and his colour was poor so he was taken down to SCBU. By the time he was 6 hours old he was ventilated. He stayed that way (on and off the vent and CPAP) for a few weeks.. eventually making some progress and managing with a nasal canula. We finally got him off oxygen and home at 9 weeks 1 day old.

He was 9lb 12 at birth and 4 days late. He was discharged as 'healthy'.

I knew he had devepmental problems almost straight away - he just didn't 'handle' right but it took me months to get them to take any notice as they said it was to be expected because he had been so ill.

Over the years he has made stready progress and is a lovely happy sociable boy but it severely disabled with no diagnosis. His various 'experts' call his condition 'dystonic cerebral palsy' or 'four limb motor disorder'. All genetic tests to date have been negative included some instigated by me from my own research (lumbar puncture re neurotransmitor/metabolic disorders: result from tested the cerebro-spinal fluid was 'plumb normal' and I emailed it to the only specialist in this field, who lives in Texas, for a second opinion just to make sure.) He has eczema, food intolerences, glue ear, hypothyroisism (the one condition they DID identify back in SCBU) and has recently developed epilepsy (this year.) He has never met any milestones.. and I long since stopped checked for them (threw the books and charts away!) but he can take a few steps now on some days.. although still prefers to crawl. He can speak in single words and short sentences and his understanding is better than 'they' think. He has a fab sense of humour and goes to a mainstream school with constant one-to-one.

He had an MRI brain scan at 18 months which showed 'an essentially normal brain but with feaures of immaturity'. The plan has always been to scan him again at 5.. and he is due at Guys tomorrow for it but I have had to cancel because he had a cold and is not fit for general aneasthetic.

In his early years I felt that his early problems must have CAUSED his developmental problems but although he was very ill and in need of intensive care, there were never any dramatic desaturations or bradicardias.. and no evidence of any bleeds on the scan... so nothing to suggest that brain damage occured in his neonatal period. Indeed no evidence of brain 'damage' on the scan at all - although there must BE some.. probably related to the basal ganglia.

He has also been tried on El Dopa (weaned onto and then off) to see if it made a difference but it didn't.

He neurologists (both) are of the opinion that he has a genetic problem caused at the moment of cocenption or occured during (my uneventful) pregnancy and the problemss at birth were symptoms of the his overall condition rather than having caused it. I think I agree with this. He has so many little things wrong with him that I think he must have a 'syndrome' but I can't find one that matches him. He has many clinical features of many different syndromes (even 'funny' things like pre-aricular pits in the tops of his ears.. they look 'pierced'!).. there must a condition that would tie all these things together.. but I am currently not looking because he is making such good progress despite the recent fits which I admit threw me for six as I thought we had escaped epilepsy.

Sorry for the essay! It is a subject close to my heart too.. I do have moments when I wonder whether there has been a 'cover up' somewhere but I used to read his nursing notes everyday.. and comment when I thought they were inaccurate (I was a Pushy Mother in the making even then! ) so I don't think anything got missed or hushed up.

CJ x

Oh and DS's Apgars 4 at 1 minute and 8 at 5.

yes difficult, yes GDD

pages have changed my name for this as a regular poster but cant reveal who I am for legal reasons, some of you will probably recognise me please dont give me away

I have a child with GDD.
I had a diffulcult time when I had my baby. I was in labour for weeks and was sent home all the time. Midwife on one occasion wanted an emerg c section because his heartbeat was in distress (for longer than a minute)but 2 doctors said no and sent me on to a ward.
A week later I had baby and agpar score if I remember correctly was 7 out of 10. Baby had a seizure soon after birth and was sent to scbu.
I remembered when I gave birth why was there so many docs etc in the room, this never hit me until I found out the next day that baby had pooed inside me at least 2 weeks before birth.

Baby has been tested for everything and they can find nothing wrong, even genetic, chromosonal they can find nothing.

It wasnt until last year i read an article about some woman who sadly lost a child because he had pooed inside her and the ambulance wasnt quick enough that I decided to take legal action. I am now currently in the process of this and gave the trace to lawyer and he has said we have a strong case.

DD (autistic with SLD) had a very difficult birth. Very prolonged, particularly the final stage, and meconium in the waters, head monitor etc etc... She also turned back to spine halfway through labour. Almost had a c-section. She was born by ventouse in the end and also spent 48 hours undergoing treatment for jaundice (and I keep reading accounts of autistic children who had jaundice as newborns). Part of me thinks that DD's 'genetic' condition caused the bizarre labour. Her apgar scores were fine. I also think a later onslaught of recurrent ear infections, antibiotics etc didn't help her development. But who knows?

Creepy Jess, just wondered what you meant by "didn't handle right". The only thing that I noticed about DS1 was that he didn't seem to reach out for or bat toys with his hands. My Ds2 (now 8 weeks) is much more "grabby" - he even holds his bottle and dummy sometimes(although this seems to be a little unusual to me)...??

Ps so sorry to hear of all your experiences. Fio, in what way was yours difficult, if you don't mind me asking? And how old and how far behind are your children?

FWIW, my DS1 did not have a particularly traumatic birth, no meconium, foetal heartrate monitor did not pick up any difficulties BUT when he was born he collapsed, was blue, not breathing, heart rate very very low, had to have adrenalin shots (the third one intracardiac) to bring him round. Have always wondered, but will never know, to what extent it has contributed to his admittedly quite minor difficulties that have led to him having a dx of HFA.

What's HFA?

i was left with my waters broken for nearly three days
caught infection, dural tap (which is a lumbar puncture resulting from an epidural)
baby posterior (back to back)
baby in distress
failed ventouse
failed forceps
emergency section
meconium stained at birth
she had a 'dusky' episode and went to scbu, she had a low blood sugar levels, was whining and completely in distress, bruised
She had sevreal ultrasounds on her brain which showed she had cerebral oedema (swelling of the brain) but they dont think she bled

My daughter has delays in reaching milestones which are not linked to any known cause. Chromosomes normal, etc.

Her birth, however, was not particularly traumatic. She did have her hand up by her head, so I needed forceps to deliver, but her heartbeat never registered distress, and the consultant was called after I'd pushed a little over an hour - she immediately suspected the baby's position was causing difficulties and so quickly delivered w/forceps.

Apgar perfect, she was breathing straightaway, no meconium, etc.

What I will always wonder is if that thiomersal in the DPT jab affected her development or not . . .

dd2 has GDD, no diagnosis or obvious chromosomal abnormalities. She is 4.5 and can crawl, but not walk (yet) and can say 'mumma'. She does have some definite understanding.

She did have a quite difficult birth, she had passed meconium, heart rate kept dipping with each contraction but the fetal scalp test showed her oxygen levels were fine. A caesarian was being discussed due to slow progress but suddenly everything happened and she was born quickly. She had to be suctioned and her cry sounded quite weak but think her apgar scores were OK (don't actually know, should find out). She had totally blue hands and feet. She didn't go to SCBU but was in a heated cot due to low body temp, also v slow to get the hang of feeding, she had to be fed by syringe for a while.

I still feel that her problems are more likely to be genetic, but it is difficult to be sure.

i was induced 2 weeks early when i had my son. they tried twice to give me an epidural. first time she made my nerves bleed in my spine which caused me to vomit voilently, go dizzy and nearly pass out with the pain. second time it only worked down one side of my body which was terrible. my son was born cold and grunting, spent time in scbu and was jaundice when we went home. i knew straight away there was something wrong. he didnt open his eyes for weeks and didnt focus when he did. severe global development delay is what theve said. i will always feel guilty about the epidurals in case this is what caused his problems.

dd had GDD though this isn't her diagnosis as she has a genetic condition. We had a difficult birth - ended up being emergency cesar. Her apgars were all good. I actually think like creepyjess that her problems caused the difficult birth rather than the other way round. Well, I know it wasn't the other way round as she has significant brain abnormalities.

Despite the fact that she has significant delays now she developed normally until about 5 months when she started having seizures.

Fio, God your birth experience with DD sounds awful.. I hadn't realised you had been through that. Have they actually said that this is the cause of DD's problems? And could/did you go legal with it?

Pages, when I said DS 'didn't handle right', at that stage it was something I probably wouldn't have noticed for a while if I hadn't been an experienced mum and with a DD only 18 months older than the DS in question.. He had serious head lag going on (when you lift them from lying, by their hands, and they make no effort to support their heads).. he felt alternately stiff/floppy (to this day his muscle tone is very variable).. and the only time his hands felt relaxed was in sleep. His hands were actually fisted most of the time until he was getting on for a year (they're not now.. he uses them well although not 'normally').

My DS, as you mentioned, also didn't grab. He would follow everything with his eyes but didn't reach for things for ages. When we put him under his baby gym he soon realised that he could make the toys move but this was very very uncontrolled.. he just used to bash at them with random movements for months.. he couldn't use his fingers at all really at that stage.

CJ x

All very interesting reading. Loved a comment I read by someone that Nature loves diversity but humans don't. We always love our children and dwell on their positive aspects though if a mum is worried she is not always taken seriously.

About my youngest son I always asked did the awkwardness cause the problems or did the (birth) problems cause the awkwardness? I have always blamed his birth. Maybe it was a combination of both factors.

When I arrived at the hospital approx 3/4 hr before his birth I was told that the pain right from the very start!! had been caused by his being posterior presentation. Though his head did come out sideways. (Vertex L.O.L.) and he was bruised, black eyes, grazed ears and I had a tear all this was put down to 15 min second stage of labor. The breathing apgar was a bit down and they mentioned in the notes that he was a little slow to start breathing. I also needed phsio. and he was such a fractious baby I stayed in the home as long as I could. He would also stiffen his body when he cried so that he had the nick name Rigor Mortis. He also had difficulty latching on and sucking. (Had I not had success twice before I would not have persevered) His cry was a high pitched warble. The nurses used to wheel him out of the nursery into the vacant theater as he cried so much. Things didn't improve. Took him to a cranial osteopath. Improvement was slight. Later had to be taught his milestones, no speech at three, coordination difficulties, early school years extensive teacher aid support and it goes on. Not GDD but just DD was the initial diagnosis. One of his teacher aids said Dysphasia, SPELD said Dyslexia. Though the physical problems and clumbsiness tell me Dyspraxia.

I remembered distinctly that after I birthed his head the midwife said his shoulder was stuck. Half of the 15 mins was getting the rest of him out and I can honestly say that if I hadn't already had two children I would have informed someone that it is complete rubbish to say that after the head the rest is easy. He was not a big baby at all. Later his birth notes weren't written by the midwife but the attending nurse. No comment about the Posterior labor, no mention of the shoulder, no mention of his difficulties feeding, no mention of staying in the home longer, no mention of him being fractious and a worry. I was very ignorant about a lot of things to do with birth and birth notes.

Dd1 birth foetal heartrate showed bad distress emer section performed and they lost heartrate but they got her out at 33 wks with apgar of 9. Dx adhd and AS traits.

Dd2 foetal distress at 32 weeks they left me attached to monitor with her heartrate dipping for 12 hrs as they didn't have a spare doc to perform section!! At one point they lost heartrate, midwives got very shitty and wanted me transferred as they were worried for dd2s life. 12 hrs later after much stress delivered by section apgar of 9. Awaiting ados test for HFA and ultrasound showed some white patches on brain.

I will never have another baby far too stressy

creepyjess preauricular pits are generally perceived to be a syndromic marker as are microtia (small ear).

My DS has Treacher Collins which is a craniofacial syndrome. His difficulties are ASD, but I do wonder if he really has GDD as he was very slow to hit so many milestones. Sitting, rolling, crawling, standing and walking. He has no speech and is deaf. He came out in a rush. He was dx in utero as having ventriculomegaly which is when the ventricles in the brain become enlarged and fluid filled. 20% of babies will suffer from some sort of developmental delay.

Ahhhh! That will teach me to it read the date of the original post!!!!

my first message on mumsnet! still on quest to find out what cause of 9 yr old daughter`s global development delay. meconium in birthpool at a centre followed by 45 min trip in ambulance to hospital. Husband says she was so quiet at birth that he got worried. Done blood tests and brain scan- nothing doing. Now fearing it was meconium aspiration which was not dealt with at London hospital...

Long labour, 2 epidurals as first only worked on one side of body, baby with distressed heart rate, ventouse delivery. No mention was made of meconium but baby was sicking up dark mucus-like stuff for days, very poor feeder, lost a lot of her birth weight.

Epilepsy. First question neurologist asked was did dd have a difficult birth.