Don’t do it alone
Friendship is born at that moment when one person says to another:
What! You too? I thought I was the only one…
The Parent Support Network exists to match parents who have had similar prem experiences together for support.
If you would like to talk to someone on a confidential basis about any of your concerns, or perhaps you just need to chat, you can contact us on 1300 mypremmie (1300 697 736) or email us at contact_us @lifeslittle_treasures.org.au. We will then forward your details to the parent with the most similar experience.
If you would like to be part of the network and be there to chat with other families about your experience then please let us know. As they say, a problem shared is a problem halved, and talking with someone who truly understands your journey can make things just that little bit easier.
Details: 915gms, apnoea and bradycardia, delay in gross motor development.
Born: 25 weeks
Details: IVF with complications, hospitalised for term of pregnancy, severe haemorrhaging. Chronic lung, respiratory & feeding issues, Stage 4 ROP & complications. Was home on oxygen. Wore glasses until 9yrs of age. Is an Asthmatic. Toilet training issues until 5 years of age. Some attention/concentration problems. Mild Aspergers.
Mother: Anne- Marie
Born: 24wks 5 days
Details: Weighing 675gms, haemorrhaging and infection behind placenta.
Baby: Lily & Charlotte
Born: Twins born at 24wks 5days
Details: 685grams & 667grams. Chronic lung, A’s & B’s.
Details: emergency c-section weighing 1334g due to severe pre-eclampsia and HELLP syndrome suffered IUGR and sepsis infection. Gross motor issues requiring physiotherapy. Second baby born at 36 weeks due to pre-eclampsia again
Baby: Hunter 35+2 wks & Deegan 32+2wks
Hunter – 1705gms. Preterm Labor, PE, IUGR, Bicornuate Uterus, Fetal Distress. Emergency C-Section with Spinal, 5 weeks in SCN. Sensory Issues, Language/Speech Delays, Social and Behavioural Issues.
Deegan – 2133gms. Preterm Labor, BU, PPROM, Placental Abruption, Fetal Distress. Emergency C-Section under a GA (Code Green), 6 weeks in NICU/SCN. Respiratory Distress Syndrome, Jaundice, Grommets due to Hearing Loss and Fluid Issues, Speech and Gross/Fine Motor Delays, Low Muscle Tone.
Born: 30 wks
Details: 1600g. Spontaneous labour (Ventalin and bed-rest treatment for subsequent pregnancies). Chronic lung disease, left and right pneumothorax, cerebral haemorrhage. Hydrocephalus with a permanent shunt, very mild cerebral palsy resulting in delay in gross motor development. Epilepsy, now controlled with medication. Now an adult, working with computers. Also has a full-term daughter, Jenny, with Juvenile Arthritis. (now an adult)
Baby: Thomas, Joshua, Luke – 27 weeks (Identical Triplet Boys)
Details: Thomas 910gms, Joshua 780gms & Luke 920gms. Born early due to one placenta, TTS – Twin to Twin Transfusion Syndrome. Two babies were intubated and one on CPAP for up to 6 days. 11 Days in NICU followed by 12 weeks in Special Care. No major long term problems or complications.
Baby: Coby & Lachlan (Now an angel) – 29 week twins
Details: 1121g & 1551g – Twin to twin transfusion, sudden unexpected loss of bigger stronger twin after 3 months, un diagnosable metabolic bone disorder, pulmonary hypertension, chronic lung, more than 8 months in hospital (7 months in NICU). Home on drugs, oxygen & with feeding tube. Long term expressing, long term home oxygen, long term NGT and ongoing feeding issues.
Born: 35 wks
Details: Mum: emergency c-section due to severe pre-eclampsia. Baby boy: in SCN for 5 weeks, severely IUGR (weight was 1.4kg at birth, dropping back to 1.1kg post-birth), 2 x VSDs (holes in heart) with heart murmur, all self-healed by 18 months. Exclusively formula fed, as mum had no milk. Very severe Hypospadias, requiring 3 major operations plus an orchidopexy. Duane’s Syndrome (rare eye movement condition). Ear tag, requiring removal. Delay in walking, requiring some occupational therapy, and delay in toilet training. Asthma and eczema. Now 3 and very bright, but remains ‘young’ for his age.
Parent: Meaghan & Alex
Baby: Twins: Milly-Rose and Lachlan
Born: 24 weeks – weighing 545grams and 622grams
Details: Pre term labour at 22 weeks, over 189 days in hospital, chronic lung, PDA ligation, bowel perforation & stoma, pneumonia, oesophageal perforation, respiratory failure on numerous occasions, ongoing dexamethosone steroid treatment, home oxygen, twins separated and across two different intensive care units for 4 months, pneumothorax, incubated for 8 & 9 weeks, long term CPAP, numerous infections, gross development delay, vocal palsy due to severed laringiual nerve, lung collapse, ongoing early intervention for speech, occupational therapy etc, picu admission post nicu discharge.
Born: 26 weeks – 760g
Details: Emergency caesarean due to severe pre-eclampsia. In NICU 5 hours away from home. Major gut infections, hole in the heart that healed itself, ROP that eventually cleared, nearly lost milk supply due to doctor putting me on the wrong contraceptive pill. Spent 11 weeks in hospital. Two years on and Hali is great, besides having a very weak immune system, lots of doctors’ visits and home time. I’m now a Treasure Time group coordinator for Life’s Little Treasures Foundation.
Details: 1.1kgms, placenta previa and abruption, delay in gross motor development.
Born: 26.5 weeks
Details: Mum had emergency c-section sudden severe pre-eclampsia, struggled to get milk at first with lactation assistance expressed & bottled fed 7 months on minimum amounts. Baby had severe IUGR for gestation 638g, heart murmur and mild hypertension with medium to large ASD (hole in heart) will require surgery to correct between 3-5yrs. At age 20 months (17 corrected) still very growth restricted only 7kg with mild feeding problems/behaviours requiring assistance.
Details: Mum: pprom at 26+3wks, c-section at 28+1wks due to infection. Baby boy: in NICU for 407 days, 1.1kg. HFO first 9mths. PDA ligation 4wks old. Major setback at 6mths & severe Tracheobronchomalatia diagnosed. Numerous courses of steroids, course nitric oxide. NJ tube from 3mths (unable to breastfeed) including Kangaroo pump until PEG insertion at 14.5mths requiring further 2 emergency operations & 1 month in hospital. Hernia (inguinal) operation at 12mths. Home oxygen until 2.7 years old. 12 monthly check-ups for eyes/ears/heart/lungs. Ongoing drinking/feeding issues, asthmatic. Now an energetic, chatty little hawks supporter!
Born: 510 grams @ 26w, siblings – James (34w) and Jasper (32w)
Details: Extreme IUGR, PPROM from 19 weeks, hospitalised with all pregnancies. Dealing with severe feeding aversion and SPD (Sensory Perception Disorder)