Thursday, 2 July 2009

Hope's prenatal diagnosis

5th August 08 (11 weeks+5 gestation)
Scan report: 'The fetal stomach is not in the chest. This means that a congenital diapragmatic hernia is less likely than if it had not previously happened'.(LI) (Hurrah- she doesn't have CDH-what baby Sam died of. Oh and at this point we were told she looked like a boy. We were reffered back to our local hospital to continue our routine pregnancy.

3rd September (16 weeks)
Scan report: No DH seen (diapragmatic hernia)
This was when we were told that baby was indeed a girl
But our happiness was short lived. AJ rang us later in the day to say she'd noticed possible enlarged ventricles/hydrocephalus? and had reffered us back to Oxford.
5th September (16+3) Oxford
Scan report: 'I consider these apperances to be within normal limits. Rescan in 2 weeks with LI' (PC)

1st October (20 weeks) Swindon
Scan report: ventricles prominent 10-11mm. Cerebellum 16mm. No other fetal abnormality seen. Cephalic presentation.

7th October (18 weeks) Oxford
Scan report: Referred from Swindon- Ventriculomegaly? Previous child NND due to CDH. There is right-sided ventriculomegaly measuring 12mm for the posterior horn and the anterior horn. The left side looks normal. The cerebellum looks small for this gestation. The rest of the brain looked normal. There are no other abnormlities.
MRI arranged (performed at 21 weeks)
Infection screen
Amnio performed

MRI Report (dated 21st October - though we recieved the findings earlier)
MRI findings 'This shows a cerebellar diameter of 14.4 mm which at 21 weeks is well below the normal range. It also confirmed unilateral ventriculomegaly, but there is no clear unifying diagnosis, particularly as the cerebellar vermis is present and the corpus callosum is normal.'
..We have discussed the fact that babies with these sorts of prenatal findings are almost invariably neuro-developmentally delayed and it is impossible to tell to what degree of severity, but she is aware that it is quite possible that the baby would neither be able to walk or talk. They are nevertheless very clear that they wish to continue with the pregnancy...I do not see that there is any need for her to deliver at Oxford or for us to scan her again , although I have arranged to see her again at 36 weeks. The mode of delivery will need to be discussed if the is marked hydrocephalus, but this is unlikely and i would have thought it appropriate for her to deliver normally without being induced'
...' Clearly the paediatrician will need to be involved after birth, but i do notseethat Oxford's neo-natal unit has any clear advantage over Swindon. I have warned her that the baby may look dismorphic and is likely to have abnormal neurological tone...'
'I cannot see any connection with these 2 major abnormalities and think it is just extremely bad luck. Certainly a geneticist has been involved and she has had an amniocentisis and this has shown a normal karyotype'

5th November (25 weeks)
Ventricles: r=14mm l=11mm. Cerebellum 23mm. Appointment with LG (neonatal) made. Cephalic

26th November (28 weeks)
Ventricles: r=16 l=11mm. Cerebellum 25mm
, Breech presentation.
5th centile for growth HC + AC measurements

10th December (30 weeks)
Ventricles: R=17mm L=11mm. Cerebellum 30mm.
Estimated fetal weight 2lb08oz

24th December (32 weeks)
Ventricles R=17mm L=11mm
Cerebellum 30mm
Slipped below 5th centile for HC (255mm) AC 250mm
Estimated fetal weight 3lb4oz

7th January 2009 (34 weeks)
Scan report: Ventricles R=18mm L=11mm
Estimated fetal weight: just under 4lb - equivalent to a 30 week gestation baby
Head circumference: 275mm Abdominal circumference: 275mm
AJ said the cerebellum appears 'fairly normal'!!!
Oh MY God- my baby, the one Oxford would have 'terminated without question' because of her small cerebellum, could have a normal cerebellum! Only time will tell i guess. I can't wait to meet my lil girl. To hold her in my arms. But I am also so scared. Scared of it all going wrong and coming home empty handed again- well apart from the souvineers the hospital give you when your baby dies; the hair, the hand and foot prints. I'm scared that, the worse prognosis may be right- that she'll never walk or talk, that i'll come home from hospital and have to leave her there because she's not able to feed, or because she has such poor neurological tone, just because she's too tiny to come home. Hopefully she'll make it to the 5lb mark by the time she's born. I'm eating lots of chocolate to help her in the right direction She'll be born by c-section on the 28th January at 37 weeksObviously c-section is not my fisrt choice, but can you believe it, we are not having a c-section because of her problems (ventriculomegaly and small cerebellum) but because she is breech! Although they've said she may turn, as time goes by, this is becoming less and less likely. I'm pretty certain she's very happy as she is- she's been this way up for quite a while now-despite me trying the all fours postition and asking her nicely- she's not budgingI'm quite used to being able to pat her on the head which i can tell you, with her being my 4th is rather strange.
20th January
On Tuesday we went for our last official ultrasound appointment. Although of recent, we have been encouraged by the growth of her cerebellum and the only slight increase in her ventricles at Swindon' GWH, i knew we were in for some painful truths from John Radcliffe Here's our reality check:'This fetus has ventriculomegaly. The right ventricle measures 16mm and the left 12mm ( should be under 10mm). The cerebellum remains small for gestation at 32mm. I cannot see the cavum septum clearly (great so we've got another problem! apparently this was noted at the mri yet is not mentioned on the mri report).Mrs Matthews is aware that there will be some degree oof handicap and that this is difficult to predict. However, this is more likely to be at the severe end of the spectrum. We have discussed this before and Mrs Matthews would prefer to wait and see (i pressume this is reffering to the fact that i could still legally terminate her ) She is delivering at 37 weeksPlease let us know how she and the baby get on'Nice eh? I suppose i sometimes try to think, and do convince myself that she might be fine, but in reality...well..only time will tell. Not long now though. I'm having a c-section on the 28th January. Part of me is sad because she is my last baby, i'll miss having her in there, even though her head being under my ribs is causing me great discomfort. Also, im not too thrilled about the prospect of having a c-section after having 3 fairly normal deliveries.However, I have had enough of the 'morning sickness' (yes, aren't i lucky), the heartburn, the worry about whether or not i'll get to keep this baby, worry about whether she'll go to special care, worry about whether she'll look 'dysmorphic' (oxford's term), worry about whether she'll be able to feed, whether she'll have 'poor neurological tone'. i have had enough of the uncertainty. Bring it on. Im ready to meet my little girl!In the words of Barack Obama 'WE'VE CHOSEN HOPE OVER FEAR!

1 comment:

  1. Wonderful post. Can you list out the generally accepted guidelines for eligibility of a pregnant women for prenatal diagnosis?