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FAQ Brochure # 1

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FAQ Brochure # 6

FAQ Brochure # 7

Myths about Hydranencephaly

Myths Brochure

Dear Doctor Letter

“Research” Results

April 2007: preliminary results of 2006-2007 survey now online

The following are the results of 3 questionnaires/research studies, which families have participated in. I believe that it’s the first “study” (non scientific) that looks at children with Hydranencephaly and identifies common factors and differences in their abilities, care needs, etc. The first questionnaire was available at Flashbase over approximately 12 months. Fifty eight people participated. The 2nd was available via the yahoogroups polls section. Each question had a different number of participants. Only people subscribed to the mailing list were able to participate, and those who had more than one child with the condition could only answer for one child. Therefore I don’t think it’s as accurate. The 3rd was conducted online via a form and via snail mail and was available from September 2002-February 2003. 81 families participated. I am including the numbers in the basic statistics in brackets. I am also including in brackets some of the statistics on the children with hydranencephaly who have died.

I've found some of the results of this study surprising and contrary to what we've previously assumed about this condition and others were expected.  The main results appear on this page but to get a true picture of our children their stories also have to be seen.

 

Question

Questionnaire # 1

2001

58 participants

Questionnaire # 2

2002

variable # for each ?

Questionnaire # 3 2002-03

(81 participants)

 

Child’s Sex

Male 53.4% (31)
Female 46.6% (27)

Male: 61.54% (24)
Female: 38.46% (15) (39 responses)
 

Male: 58% (47)
Female: 41.2% (34)

 

Age at time of questionnaire

Deceased: 9
Under 1: 22.3% (13)
1 year old: 6.8% (4)
2 - 6 years old: 32.7% (19)
7-10 years old: 15.4% (7)
11-15 years old: 11.9% (5)
16 and over: 1.7% (1)

 

Deceased: 2
Under 1: 24.33% (9)
1 year old: 10.82% (4)
2-6 years old: 37.85 (14)
7-10 years old: 13.52% (5)
11-15 years old: 5.41% (2)
16 and over: 1.7% (1)*
(37 replies)

Deceased: 16% (13)
Under 1: 18.5% (15)
13-18 mos.: 2.46% (2)
19-24 mos: 3.7% (3) 25 months-3 years: 18.5% (15)
4 years: 5 % (4)
5 years: 3.7% (3)
6 years: 6.17% (5)
7 years: 3.7% (3)
8 years: 2.46% (2)
9 years: 6.17% (5)
10 years: 1.23% (1)
11 years: 3.7% (3)
12 years: 0
13 years: 2.46% (2)
14 & 15 years: 0
16 and over: 6.17% (5) *

 

Who is child living with?

Birth family: 60.3% (35)
Extended family 5.2% (3)
Adoptive family: 24.1% (14)
Foster family: 6.9% (4)
Other: 1.7% (1)

Birth family: 60.53% (23)
Extended family: 5.26% (2)
Adoptive family: 23.68 % (9)
Foster family: 7.89 % (3)
Other (2.63%)1
(38 replies)

Birth Family: 49.38% (40)
Extended Family: 7.4% (6)
Adoptive Family: 27.16% (22)
Foster Family: 9.87% (8)
Other: 2.46% (2)

 

Age of mother at time of child’s birth

Under 14: 1.7% (1)
14 years: 1.7% (1)
15 years: 1.7% (1)
16 years: 17.2% (10)
17 years: 8.6% (5)
18 years: 6.9% (4)
19 years: 6.9% (4)
20-25 years: 29.3% (17)
26-30 years: 13.8% (8)
over 30: 10.3% (6)

Under 14:0
14 years: 8.33%  (3)
15 years: 0
16 years: 11.11% (4)
17 years: 8.33% (3)
18 years: 2.78% (1)
19 years 8.33% (3)
20-25 years: 33.33% (12)
26-30 years: 19.44 % (7)
over 30: 8.33% (3) (36 replies)

Under 14: 0
14 years: 5 % (4)
15 years: 1.23% (1)
16 years: 11.11% (9)
17 years: 7.4% (6)
18 years: 7.4% (6)
19 years: 9.87% (8)
20-25: 27.16% (22)
26-30: 23% (19)
over 30: 6.17% (5)

 

Did mom have prenatal care?

Yes: 67.2% (39)
No: 32.8%  (19)

Not asked

Yes: 65.43% (53)
No: 30.86% (25)

 

Suspected Reason for condition

Prenatal stroke: 43.1% (25)
Prenatal infection: 8.6% (5)
Death of twin in utero: 6.9% (4)
Prenatal drug use: 5.2% (5)
Other: 8.6% (5)
Unknown: 41.4% (24)

Prenatal stroke: 43.59% (17)
Prenatal infection: 5.13% (2)
Death of twin in utero: 2.56% (1)
Prenatal drug use: 7.69% (3)
Other:  10.26% (4)
Unknown: 30.77% (12)
(39 replies)

Prenatal stroke: 38.27% (31)
Prenatal drug use: 11.11% (9) 
Prenatal infection: 7.4% (6)
Death of twin: 5% (4)
Unknown: 44.44% (36)
After birth: 2.46% (2)**

Some of the other causes mentioned were: alcohol abuse, placental abruption, blood clots in baby, incompatibility due to mom being HLA1a.

 

At what age was your child diagnosed with hydranencephaly?

Before birth: 19.0% (11)
At birth (less than 24 hrs after birth): 41.4% (24)
Less than one month: 13.8% (8)
1-12 months 15.5% (9)
over 12 months 3.4% (2)

Not asked

Before birth: 33.33% (27)
birth (>24 hrs old): 34.56% (28)
Less than one month: 18.5% (15)
1-12 months: 5% (4)
over 12 months: 1.23% (1)

 

What are your child’s most common health concerns?

Respiratory: 41.4% (24)
Neurological (shunt/seizures) 62.1% (36)
Feeding: 31.0% (18)
Spasticity: 19.0% (11)
Other: 15.5% (9)

Respiratory: 28.57% (12)
Neurological (shunt/seizures): 38.1% (16)
Feeding: 11.9% (5)
Spasticity: 9.52% (4)
Other: 11.9% (5)
(42 replies)

Respiratory: 51.85 (42)
Neurological (shunt/seizures): 71.6% (58)
Feeding: 40.74% (33)
Spasticity: 55.55% (45)

 

 

Does your child have allergies?

Yes: 32.8% (19)
No: 63.8% (37)

Yes: 35.71% (10)
No: 64.29% (18)
(28 replies)

Yes: 35.8% (29)
No: 60.49% (49)

 

What is your child allergic to?

Latex: 6.9% (4)
Environmental:19.0% (11)
Medications: 15.5% (9)
Food: 8.6% (5)

Latex: 13.04% (3)
Environmental: 17.39% (4)
Medications: 17.39% (4)
Food: 4.35% (1)
Other: 8.7% (2)
Nothing: 39.13% (9)
(23 replies)

Latex: 3.7% (3)
Environmental: 16% (13)
Medications:14.8% (12)
Food: 7.4% (6)
Other: 8.64% (7)

 

Does your child have a shunt?

Yes: 70.7% (41)
No: 27.6% (16)

 

Yes: 66.67% (20)
No: 33.33% (10)
(30 replies)

Yes: 60.49% (49)
No: 38.27% (31)

 

Does your child have:

Tracheostomy: 5.2% (3)
Current DNR: 22.4% (13)
Previous DNR: 24.1% (14)
Ventilator: 1.7% (1)
Hypothyroidism: 6.9% (4)
Asthma/Reactive airways disease: 24.1% (14)
Diabetes Insipidus: 19.0% (11)
Diabetes: 0
Premature Puberty: 22.4% (13)

Tracheostomy: 11.11% (4)
(36 replies)

Tracheostomy: 7.4% (6)
Ventilator: 6.17% (5)
Diabetes Insipidus: 27.16% (22)
Diabetes: 0
DNR: 17.28% (14)
Previous DNR: 18.5% (15)
Bipap: 3.7%(3)
Asthma/RAD: 19.73% (16)
Premature puberty: 19.73% (16)

 

Has your child had bacterial or viral pneumonia?

Yes: 43.1% (25)
No: 56.9% (33)

Yes: 37.93% (11)
No: 62.07% (18)
(29 replies)

Yes: 32.1% (26)
No: 60.49% (49)

 

Has your child had aspiration pneumonia?

Yes: 29.3% (17)
No: 69.0% (40)

Yes: 26.67% (8)
No: 73.33% (22)
(30 replies)

Yes: 33.33% (27)
No: 62.96% (51)

 

Does your child use oxygen at home?

Yes: 20.7% (12)
No: 77.6% (45)

Yes: 17.24% (5)
No: 82.76% (24)
(29 replies)

Yes: 24.69% (25%)
No: 72.83% (59)

 

Does your child need suctioning?

Yes: 37.9% (22)
No: 58.6% (34)

Yes: 39.29% (11)
No: 60.71% (17)
(28 replies)

Yes: 46.91% (38)
No: 51% (41)

 

Does your child get gurgly?

Yes: 58.6% (34)
No: 39.7% (23)

Yes: 71.43% (20)
No: 28.57% (8)
(28 replies)

Yes: 70.37% (57)
No: 22.22% (18)

 

Is your child more likely to have a:

high temperature: 12.1% (7)
low temperature: 60.3% (35)
16 people didn’t respond to this ?

High temperature: 31.03% (9)
Low temperature: 68.97% (20)
(29 replies)

High temperature: 13.58% (11)
Low temp: 34.56% (28)
Both: 30.86% (25)

Does your child have seizures?

Yes: 75.9% (44)
No: 20.7% (12)

Yes: 82.76% (24)
No: 17.24% (5)
(29 replies)

Yes: 75.3% (61)
No: 19.73% (16)

Has your child had any urinary tract infections?

Yes: 24.1% (14)
No: 75.9%

Yes: 23.08% (6)
No: 76.92% (20)
(26 replies)

Yes: 20.98% (17)
No: 75% (61)

Does your child have Kidney problems?

Not asked

Not asked

Yes: 8.64% (7)
No: 90.12% (73)

Has your child had any ear infections?

Yes: 51.7% (30)
No: 44.8$ (26)

Yes: 81.48% (22)
No: 18.52% (5)
(27 replies)

Yes: 51.85% (42)
No: 45.67% (37)

Has your child

had tonsillitis?

Yes: 10.3% (6)
No: 89.7% (52)

 

Yes: 19.23% (5)
No: 80.77% (21)
(26 replies)

Yes: 16% (13)
No: 81.48% (66)

Does your child get “junky” eyes

Not asked

Not asked

Yes: 49.38% (40)
No: 49.38% (40)

Does your child have “coma” incidences (hard to rouse, low temp., low heart rate, etc?)

Yes: 55.2% (32)
No: 41.4% (24)

Not asked

Yes: 46.91% (38)
No: 50.61% (41)

Does your child have trouble sleeping?

Yes: 55.2% (32)
No: 41.4% (24)

Yes: 44.83% (13)
No: 55.17% (16)
(29 replies)

Yes: 53.08% (43)
No: 44.44% (36)

Have you tried Melatonin?

Yes: 13.8% (8)
No: 62.1% (36)
14 people didn’t answer this question.

Yes: 34.78% (8)
No: 65.22% (15)
(23 replies)

Yes: 19.73% (16)
No: 75.3% (61)

Did it work?

Yes: 1.7% (1)
No: 13.8% (8)
Not tried: 39.7% (23)
26 people didn’t answer this question

Yes: 6.25% (1)
No: 43.75% (7)
Not tried: 50% (8)
(16 replies)

Out of the 16 who tried it, it worked for 1 child.

Does your child
Take anticonvulsants
/seizure medications?
 

Yes: 67.2% (39)
No: 29.3% (17)

Yes: 85.71% (24)
No: 14.29% (4)
(28 replies)

Yes: 66.66% (54)
No: 12.34% (10)

What seizure medications does your child take?

Not asked

None: 6.9% (4)
Tegretol: 6.9% (4)
Klonopin 8.62% (5)
Depakene  5.17% (3)
Dilantin 1.72%

Tegretol: 12.34% (10)
Frisium: 1.23% (1) Klonopin: 13.58% (11)
Tranxene: 6.17% (5)
Neurontin 0
Lamictal: 6.17% (5)
Mogadon: 2.46% (2)
Phenobarb:29.62% (24)
Dilantin: 1.23% (1)
Mysoline: 1.23% (1)
Topomax: 13.58% (11)
Depekene: 17.28% (14)
Sabril: 3.7% (3)
Valium: 9.87% (8)
Ativan: 6.17% (5)

Is your child on any respiratory/asthma medications?

Yes: 39.7% (23)
No: 56.9% (33)

Yes: 45.83% (11) No: 54.17% (13)
(24 replies)

Yes: 44.44% (36)
No: 54.32% (44)

What respiratory medications does  your child take?

Not asked

Not asked

Intal: 6.17% (5) Ventolin: 34.56% (28) Serevent: 0 Theophyline: 0 Beclovent: 1.23% (1) Prednisone: 3.7% (3) Singulair: 3.7% (3) Xopenex: 6.17% (5)
Pulmicort: 11.11% (9)

Does your child take any digestive aids or reflux medications?

Yes: 36.2% (21)
No: 56.9% (33)

Yes: 64% (16)
No: 36% (9)
(25 replies)

Yes: 45.67% (37)
No: 53.08% (43)

What medications are your child taking to aid digestion or control reflux?

Not asked

None: 14.2% (5) Propulsid: 8.75% (3) Zantac: 28.57% (10) Tagamet  0
Prilosec  8.57% (3) Prevacid 2.86% (1) Reglan 14.29% (5) Motilium: 8.57% (3) Other: 14.29% (5) (35 replies)

Propulsid: 5% (4) Reglan: 17.28% (14) Motilium: 3.7% (3) Erythromycin: 2.46% (2)
Zantac: 16% (13) Tagamet: 2.46% (2) Pepcid: 3.7% (3) Sulcrafate: 1.23% (1) Prilosec: 11.11% (9) Levasin: 0

Does your child take any medications to help him/her sleep?

Yes: 27.6% (16)
No: 67.2% (39)

Yes: 37.04% (10) No: 62.96% (17)
(27 replies)

Yes: 33.33% (27)
No: 62.96% (51)

What medications does your child take to help him/her sleep

Not asked

Not asked

Chloral Hydrate: 17.28% (14) Valergan: 3.7% (3) Valium: 1.23% (1) Benadryl: 3.7% (3) Trazodone: 2.46% (2)  

Does your child take any laxatives?

Yes: 48.3% (28)
No: 44.8% (26)

Yes: 69.23% (18) No: 30.77% (8)
(26 replies)

Yes: 60.49% (49)
No: 38.27% (31)

What Laxatives does your child take?

Not asked

Not asked

Miralax: 22.22% (18) Dulcolax: 7.4% (6) Glycerine suppositories: 25.92% (21)
Agarol: 2.46% (2) Mineral Oil: 1.23% (1) Colace: 6.17% (5) Senekot:: 9.87% (8) Lactulose: 7.4% (6)
 

Does your child take any other medications?

  Not asked

Not asked

Yes: 38.27% (31)
No: 53.08% (43)

What other medications does your child take?

  Not asked

Not asked

Baclofen for spasticity: 23.45% (19)
Saltropine for drooling: 1.23% (1) Scopolamine patch for drooling: 2.46% (2) Robinul for drooling: 7.4% (6)
Nilstatin for yeast infections: 9.87% (8) DDAVP for Diabetes Insipidus: 7.4% (6) Zertec for allergies: 1.23% (1)
Synthroid for Hypothyroidism: 3.7% (3)
Carnitor: 2.46% (2) Rhinocort for allergies: 1.23% (1) Claritan for allergies: 7.4% (6)

Does your child take medication to relieve spasticity?

Not asked

Yes: 37.04% (10)

No: 62.96% (17)

(27 replies)

See section on Other Medications

What is the first medication your

child was put on for seizure control?

Not asked

Dilantin 9.09% (1)

Phenobarb: 45.45% (5)

Lamotrigine: 9.09% (1)

Tegretol: 36.36% (4)

(11 replies)

Not asked

What medications are being used/have been used to relieve spasticity in your child?

Not asked

None: 38.89% (7) Botox injections: 0 Baclofen (oral): 27.78% (5)
Baclofen (Intrathecal pump) 5.56% (1) Phenyl Injections: 5.56% (1)
Other 22.22% (4)
(18 replies)

See question on other medications and Botox & Baclofen questions in section on physical abilities

Have you tried DHA?

 

 

Yes: 19 (23.45%)
No: 39.5% (32)

DHA worked in:

 

 

It worked for 47.3% (9) of the children who tried it.

How is your child fed?

Orally 53.4% (31)
Via tube (g, j, or ng) 32.8% (19)
both oral and tube: 12.1% (7)

Orally: 41.94% (13) Via tube: 45.16% (14)
Both oral and tube: 12.9% (4)
(31 replies)

Orally: 39.5% (32) Via Tube: 39.5% (32) Both oral & tube: 16% (13)

 

Has your child been diagnosed as aspirating?

Yes: 36.2% (21)
No: 62.1% (36)

Not asked (NA)

Yes: 40.74% (33)
No: 55.55% (45)

 

Has your child been diagnosed as having reflux?

Yes: 60.3% (35)
No: 36.2% (21)

NA

Yes: 65.43% (53)
No: 32.1% (26)

Has he/she had a Nissen Fundoplication?

Yes: 29.3% (17)
No: 60.3% (35)
6 people didn’t answer this question

NA

Yes: 32.1% (26)
No: 64.19% (52)

Does your child manage liquids?

Yes: 60.3% (35)
No: 36.2% (21)

NA

Yes: 50.61% (41)
No: 38.27% (31)

Do you use a thickener?

 

 

Yes: 14.8% (12)
No: 64.19% (52)

Does your child tolerate things in his/her mouth

 

 

Yes: 73% (59)
No: 19.73% (16)

Is constipation a problem for your child?

Yes: 74.1% (43)
No: 20.7% (12

NA

Yes: 66.66% (54)
No: 30% (24)

What is your child’s tone?

Tight: 39.7% (23) Floppy: 10.3% (6) Both: 41.4% (24)

NA

Tight: 41.2% (34) Floppy: 6.17% (5) Both: 46.91% (38)

Has your child tried Botox or Phenol injections?

  NA

  NA

Yes: 14.8% (12)
No: 80.24% (65)

Has your child tried Baclofen?

  NA

NA

Yes: 30% (24)
No: 66.66% (54)

Method of Baclofen administration

 

 

Oral/Gtube: 21 Implanted pump: 2

Can your child roll?

Yes: 29.3% (17)
No: 51.7% (30)
Used to: 12.1% (7)
Too young: 5.2% (3)

NA

Yes: 23.45% (19)
No: 62.96% (51)
Too young: 9.87% (8)

Can your child move his/her arms?

  NA

NA

Yes: 60.49% (49)
No: 2.46% (2)
A little: 32.1% (26) Used to: 0

Can your child move his/her legs?

  NA

NA 

Yes: 61.72% (50)
No: 3.7% (3)
A little: 28.39 (23) Used to: 0 ***

How is your child’s head control?

None: 6.9% (4)
Good 15.5% (9)
Poor: 25.9% (15) Changes: 10.3% (6)
A little: 27.6% (16)
8 people didn’t answer this question.

NA

None: 13.58% (11) Good: 14.8% (12) Poor: 34.56% (28) Changes: 8.64% (7) A little: 22.22% (18)

Has/does your child have a dislocated hip?

Yes: 27.6% (16)
No: 65.5% (38) Subluxed: 5.2% (3)

NA

Yes: 28.39% (23)
No: 69.13% (56)

If yes, which hip was dislocated?

 

 

Right: 7.4% (6)
Left: 6.17% (5)
Both: 13.58% (11)

Has your child had hip surgery?

Yes: 8.6% (5)
No: 65.5% (38
15 people didn’t answer this question.

NA

Yes: 17.23% (14)
No: 80.24% (65)

Does your child have any contractures?

 

 

Yes: 33.33% (27)
No: 61.72% (50)

Does your child have scoliosis?

Yes: 34.5% (20)
No: 62.1% (36)

NA

Yes: 33.33% (27)
No: 62.96% (51)

Does your child have Kyphosis (Hunched back)

Yes: 15.5% (9)
No: 82.8% (48)

NA

Yes: 20.98% (17)
No: 74.07 (60)

 

Does your child wear/use:

Hand splints during day? 36.2% (21)
Hand splints at night 8.6% (5)
TLSO (back brace): 3.4% (2)
Walker: 0
Long leg splints/knee immobilizers: 15.5% (9)
AFO’s (foot splints): 20.7%
Abduction brace: 1.7% (1)
Stander: 34.5% (20) Other: 10.3% (6)

NA

Hand splints during day: 30.86% (25) Hand splints at night: 12.34% (10)
Stander: 44.44% (36) Walker: 2.46% (2) Long leg splints: 9.87% (8)
Abduction brace: 6.17% (5)
TLSO: 2.46% (2) AFOs: 28.39% (23) Other: 2.46% (2)

Can your child move his/her hands?

Yes: 53.4% (31)
No: 20.7% (12)
A little: 22.4% (13)

NA

Yes: 48.14% (39)
No: 17.28% (14)
A Little: 33.33% (27)

Can your child touch or manipulate items?

  NA

NA

Yes: 9.87% (8)
No: 46% (37)
A little: 37.03% (30) Used to: 3.7% (3)

Can your child pick up items?

  NA

  NA

Yes: 8.64% (7)
No: 65.43% (53) Sometimes: 8.64% (7)
Used to: 2.46% (2) Too young: 11.11% (9)

Can your child bring his/her hands to midline

  NA

NA

Yes: 65.43% (53)
No: 33.33% (27)

Can your child give hugs or kisses?

  NA

NA

Yes: 19.73% (16)
No: 66.66% (54) Sometimes: 11.11% (9)

Can your child cry?

  NA

NA

Yes: 91.35% (74)
No: 6.17% (5)

What is your child’s general mood?

Happy: 67.2% (39) Fussy: 1.7% (1)
Quiet: 8.6% (5) Variable: 17.2% (10) Can’t tell: 1.7% (1)

NA

Happy: 56.79% (46) Irritable: 6.17% (5) Fussy: 13.58% (11) Quiet: 18.5% (15) Can’t tell: 2.46% (2)

What was your child’s mood as a baby?

Happy: 31% (18) Irritable: 46.6% (27) Fussy: 3.4% (2)
Quiet: 6.9% (4) Couldn’t tell: 1.7% (1) 6 people didn’t answer this question.

NA

Happy: 22% (18) Irritable: 46.91% (38) Fussy: 11.11% (9) Quiet: 14.8% (12) Couldn’t tell: 0

Is your child aware of his/her surroundings?

Yes: 79.3% (46)
No: 1.7% (1) Sometimes: 13.8% (8)
Used to be: 1.7% (1)

NA

Yes: 74% (60)
No: 2.46% (2) Sometimes: 14.8% (12)
Used to be: 0
Can’t tell: 6.17% (5)

Is your child aware of objects

 

 

Yes: 40.74% (33)
No: 17.28% (14)
Sometimes: 38.27% (31)
Used to be: 0

Does your child have a favorite toy?

 

 

Yes: 48.14% (39)
No: 46.91% (38)

Does your child have a security item?

 

 

Yes: 29.6% (24)
No: 62.96% (51)

Does your child attend school?

Yes: 31% (18)
No: 20.7% (12)
Home schooled: 12.1% Used to: 1.7% (1)
Too young: 29.3% (17)

NA

Yes: 28.39% (23)
No: 14.8% (12)

 

Is he/she:

In a special class: 20.7% (12)
Included with typical children: 6.9% (4) Mixed: 1.7% (1)

NA

Home schooled: 9.87% (8)
Used to: 8.64% (7) Too young: 37.03% (30)
Included: 12.34% (10) Special class: 19.73% (16)

 

Can your child hear?

Yes: 93.1% (54)
No: 1.7% (1)
Don’t know: 1.7% (1)

NA

Yes: 92.59% (75)
No: 1.23% (1)

Can your child make sounds?

 

 

Yes: 96.29% (78)

Does your child use any words meaningfully?

Yes: 8.6% (5)
No: 65.5% (38)
Too young: 19% (11)

NA

Yes: 9.87 (8)
No: 83.95% (68)

Does your child use a communication device?

Yes: 13.8% (8)
No: 51.7% (30)
Too young: 24.1% (14) No answer: 10.3% (6)

NA

Yes: 14.8% (12)
No: 60.49% (49)
Too young: 22.22% (18)

Can your child understand what is said to him/her?

Yes: 27.6% (16)
No: 12.1% (7)
Maybe: 12.1% (7)
A little: 5.2% (3) Sometimes: 13.8% (8) Most: 1.7% (1)
Can’t tell: 5.2% (3)
Too young: 15.5% (9)

NA

Yes: 17.28% (14)
No: 16% (13)
Some: 27.16% (22) Can’t Tell: 17.28% (14)
Most: 1.23% (1)
Too young: 18.5% (15)

Will your child echo your?

Yes: 36.2% (21)
No: 46.6% (27)
No answer: 17.2% (10)

NA

Yes: 23.45% (19)
No: 65.43% (53)

Can your child see?

Yes: 46.6% (27)
No: 17.2% (10) Sometimes: 12.1% (7) A little: 19% (11)

NA

Yes: 27% (22)
No: 16% (13) Sometimes: 12.34% (10)
A little: 20.98% (17) Not sure: 19.73% (16)

Does your child wear glasses?

Yes: 6.9% (4)
No: 87.9% (51)

NA

Yes: 7.4% (6)
No: 88.88% (72)

         

*February 2003: We have 3 members who are over the age of 20

**2 of the children included in the study were all right when they were born but suffered severe brain damage within a couple of days of their birth due to infections. Their official diagnosis is not Hydranencephaly but their CT scans and all tests are identical to those of children with Hydranencephaly.

 *** One child is able to walk, run and climb. His official diagnosis is Hydranencephaly. Drs have no explanation for why he is doing so well. We have also heard of another child who is doing well but his information is not included in this study.

  Children who have died: (these are all the children with hydranencephaly that we have had personal contact with who’s children have died. Some of these children were included in the main study. These statistics were compiled separately) For many of the children the cause of death isn’t known so these aren’t by any means accurate statistics. They’re here to just give an idea of when and how the children most likely have died.

Question

Statistics 2000

Statistics 2002

Statistics 2003

Number included

25

42

53

Sex of child:

Male: 64% (16)
Female: 36% (9)

Male: 64.29% (27) Female: 35.71% (15)

Male: 64.15% (34) Female: 35.84% (19)

Age at time of death

Stillborn: 1 (4.0%) During labor: 1 (4.0%) 2-5 days of age: 2 (8.0%)
1-6 months of age: 3 (12.0%)
6-12 months of age: 4 (16.0%)
12-18 months 1 (4.0%) 19-24 months 1 (4.0%) 2 years: 2 (8.0%)
3 years: 1 (4.0%)
4 years: 1 (4.0%)
6-10 years: 2 (8.0%) 10-12 years: 4 (16.0%) 12-14 years: 1 (4.0%) 14-16 years: 1 (4.0%)

 

Stillborn: 1 (2.38%) During labor/first day: 1 (2.38%)
2-5 days of age: 3 (7.14%)
1-6 months of age: 6 (14.29%)
6-12 months of age:6 (14.29 %)
13-23 months of age: 6 (14.29%)
2 years: 2 (4.46%)
3  years: 4 (9.52%)
4 years: 1 (2.38%)
5 years
6-10 years: 3 (7.14%) 10-12 years: 6 (14.29%)
13-14 years 1 (2.38%) 15 years: 1 (2.38%)
16 years
over 16:

Stillborn: 7.54% (4) During Labor/1st day: 0 2-5 days of age: 5.6% (3)
1-6 months of age: 13.2% (7)
7-12 months: 13.2% (7) 13-23 months: 11.32% (6)
2 years: 9.43% (5)
3 years: 5.6% (3)
4 years: 3.7% (2)
5 years: 0
6-10 years: 13.2% (7) 11-12 years: 9.43% (5) 13-14 years: 3.7% (2) 15 years: 1.88% (1)
16 years: 1.88% (1) over 16: 0

Cause of death:

 

Respiratory arrest: 16.0% (4)
Shunt Malfunction: 4.0% (1)
Liver condition/failure: 4.0% (1)
Kidney condition/failure: 4.0% (1)
Hemorrhaging: 8.0% (2) Brain Stem deterioration: 8.0% (2) Unknown: 48.8% (12) Other: 8.0% (2)

 

Respiratory arrest/respiratory problems: 14.29% (6) Shunt malfunction: 7.14% (3)
Liver condition/failure: 2.38% (1)
Kidney condition/failure: 2.38% (1) Hemorrhaging: 4.46% (2)
Brain stem deterioration: 26.19 % (11)
Other:
Unknown: 42.86% (18)

Respiratory: 28.3% (15) Shunt/neurological: 9.43% (5)
Liver condition: 1.88% (1)
Kidney condition: 3.7% (2)
GI shut down: 1.88% (1)
Hemorrhage: 1.88% (1) Brain stem shut down: 5.6% (3)
Other: 5.6% (3) Unknown: 41.5% (22)

 

What have we learned from our 3 studies? We’ve learned that the numbers and percentages for most questions has remained fairly consistent throughout all 3 studies. There are more boys that we know of with Hydranencephaly than girls.  There is no clear relation between the age of the mother at the time of birth.

"Research" Results: print friendly version

Contents of this page are from
"Caring For Your Child With Hydranencephaly"
copyright 2000-2003 Barb Aleman

 

 

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This website is funded in loving memory of Jason S. by his mother Kammy

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