Read the inspirational stories of courage and fight for survival from these amazing premature babies born at 26 weeks gestation throughout Australia including advice from their parents.
Premmie Babies Name: Danielle Heather
Gestation Born: 26 +2 weeks
Weight When Born: 722 grams
Length When Born: 33cms
Current Age: 2.5years
Current Weight Now: 11.4kgs
Babies Outlook/Ongoing Issues: Prior to birth we were told Danielle wouldn’t survive labour, once she did we were told that she had a less than 20% chance of survival all due to my membranes being ruptured (& slowly & continually leaking) from prior to the 20 week scan. Dani came home after 19 weeks and was on oxygen until she was 11.5months old. We were told that Dani has severe chronic lung disease but since coming off her oxygen she hasn’t really looked back. She still sees a number of specialists (renal, cardio, rehab clinic, lots of hearing tests & physio) and has speech therapy but these are more precautionery now and she is finally getting the all clear & ‘we no longer need to see you’ statements. She is basically a very happy healthy petite two year old.
Premmie Babies Name:Talia Rivka
Gestation Born: 26 weeks 6 days
Weight When Born: 855g
Length When Born: 34.5cm
Current Age: 2 years 5 months
Current Weight Now: A bit under 11kg
Babies Outlook/Ongoing Issues: Health: Talia spent 11 weeks on CPAP and another week on oxygen before being discharged 2 days after her due date. Despite having chronic lung disease, she has been very healthy and has never needed to be readmitted to hospital.
Weight: She struggled to gain weight at first, but gradually over the past two years climbed up from below the charts to around the 25th percentile.
Development: Talia was quite delayed in all her developmental milestones (“global developmental delay”) for the first 18 months, and received physiotherapy to help her gross motor development, as well as speech pathology. However not long before she turned two a lot of things just seemed to fall into place for her, and since then she has really started to blossom. At her 2 year corrected assessment, she rated as average or above average in all areas.
Advice From Parents: This is probably one of the most difficult experiences in your life, but try to find balance – easier said than done some days – between the worries and the joys. Don’t miss out on the happiness your amazing baby can bring you right now by stressing too much about the future. Take care of yourself, enjoy every little milestone and find people who will give you the emotional support you need (including other parents of prems) to come to terms with what has happened and start the healing process.
Premmie Babies Name: Milica
Gestation Born: 26wks + 2 weeks
Weight When Born: 575gms
Length When Born:
Current Age: 16months
Current Weight Now: 7.3kg
Babies Outlook/Ongoing Issues: At this stage (fingers crossed) all is well with Milica, she is on track developmental wise (12 1/2 months) and slowly putting the weight on …
Advice From Parents: Stay positive. Milica went thru so much and she has made me an even stronger person today that I was… if she can survive the early birth and all that happened to her in 4 1/2 months in RWH then she will be able to survive ANYTHING 🙂
Premmie Babies Name: Lylah and Charli
Gestation Born: 26+5 weeks
Weight When Born: Lylah – 940g Charli – 917g
Length When Born: Lylah – 35cm Charli – 36cm
Current Age: Just over 4 Months actual
Current Weight Now: Both girls are about 4.5kgs
Babies Outlook/Ongoing Issues:
Lylah – outlook is great for her, having some ongoing tests for mild hearing loss in both ears but we are unsure at this stage if its permanant. other than that she just has reflux which is being controlled by meds. Came home at 37+1 gestation after 10 Weeks and 3 days in NICU/SCU, which im told is ver early for a baby born at 26 weeks!
Charli – her outlook is not great, she will have a very difficult early life. After having a small PDA, and a Grade II brain bleed which both resolved themselves, she developed a volvulous (twist) of the small bowel, and after 2 operations in 24 hours (at 2 months old) had most of her small bowel and a section of large bowel removed. She’s left with 30cm of small bowel, and now has “short gut syndrome” and is currently mainly fed by TPN. It will take her a long time to learn how to eat properly. But she is going well in spite of this, gaining as much weight as her sister, and is making me proud to be her mum! She also failed her hearing test (left ear only) so will be followed up. Both girls seem to have no trouble gaining weight and are currently on track developmentally for their corrected age.
Advice From Parents: Use the support of the nurses! I dont know how we would have got through so far without some of the lovely nurses we have had. And take lots of photos, it may seem like a long journey but it goes fast and they get big so quickly!
Premmie Babies Name: Will
Gestation Born: 26 weeks and 4 days
Weight When Born: 998g
Length When Born: 35.5cm
Current Age: 6 yo
Current Weight Now: 17.5kg
Babies Outlook/Ongoing Issues: Will spent 178 days in hospital before coming home on oxygen for 5 months. He developed hydrocephalus at 5 months of age from an intraventricular hemorrhage which required the insertion of a VP shunt. He came off CPAP 2 days later and then improved dramatically.He was a very bright and aware baby but his arm and leg movements became obvious to me quite early that he had cerebral palsy. He was not diagnosed till the age of 2 and a half with CP. Still with a diagnosis of CP, it never stopped us from treating him any different. He was involved very heavily in ‘early intervention’ and still has a team of therapists he visits. His speech is perfect, he has no intellectual disability, no permanent hearing loss but requires grommets and requires the use of a walker for his mobility. He is in Prep this year, is reading, and learning at the same level of his peers.
Advice From Parents: Everyone who has had a premmie knows how tough they are, they are just born survivors, but on the other and they are still fragile. To find a balance of knowing how much to push them and shelter them is difficult. With all the developmental issues that comes with prematurity, my advice would be to get out there and be as involved as you can in ‘early intervention programs’, it makes a huge difference. Lots of appointments and alot of extra work was all worth it to see Will in school now thriving.
Premmie Babies Name: Kirsten Shepherd
Gestation Born: 26 weeks
Weight When Born: 738 grams
Length When Born: 38 cm
Current Age: 19
Current Weight Now: I was premmie born. The first few years of my life were difficult. I spent the first 6 months of my life in hospital. I have had many operations and do have bad eye sight. I don’t let anything stop me doing what i believe in. I am now 19 and loving life. Last year i completed my HSC, and am now studying a Bachelor of Nursing. Maybe one day help the babies in the same situation as me and many others of us.
Premmie Babies Name: Erin
Gestation Born: 26weeks
Weight When Born: 597g
Length When Born: 31cm
Current Age: 3 years 11 months
Current Weight Now: 12.5kg
Babies Outlook/Ongoing Issues: We have been incredibly lucky. Erin went through so much in hospital. She had PDA surgery when she was 3 weeks old, ROP laser eye surgery and so many blood transfusions I lost count in the end, she was ventilated for 5 1/2 weeks also. Now though she is very skinny and a little delayed in gross motor skills but that seems ot be about it. Even with chronic lung disease you wouldnt know she had it she has lots of colds in the last 2 years and been fine through all of them.She sees a physio and still gets assessed for her development but thats about it. I am so proud of her.
Advice From Parents: Try to take care of yourself. Try not to beat yourself up over this it wasnt your fault and there is no one to blame.
Premmie Babies Name: Patrick and Phillip
Gestation Born: 26 weeks
Weight When Born: 1494grams and916 grams
Length When Born: both 32cms long
Current Age: 3 years
Current Weight Now: 11.4kgs
Babies Outlook/Ongoing Issues: I gave birth to twins in 2006 Patrick Luca and Phillip Charles 1 minute later, unfortunately we lost our beautiful son Patrick 20 minutes after birth. Phillip spent 4 months in Liverpool Hospital NICU. Phillip has a speech delay, we still attend speech therapy, occupational therapy and physiotherapy and Phillip is coming forward a little bit each day.
Advice From Parents: Take all the support you can get!
Premmie Babies Name: Izabella
Gestation Born: 26+2 weeks
Weight When Born: 825grams
Length When Born: 35cms
Current Age: 3 years old
Current Weight Now: 11.5kg
Babies Outlook/Ongoing Issues: I was admitted into KEMH in Perth with ruptured membranes and delivered our baby girl via emergency csection five days after being admitted. Although she was so tiny she was our little fighter. She was able to breath on her own, thanks to her developed lungs (and the drug I was given to develope them quickly which I cant remember the name sorry). Occasionally she was given cpap and had one blood transfusion but all in all we were very lucky. The 10 weeks she spent in hospital she was well looked after by brilliant doctors and amazing nurses. She is now a happy and very loud 3 year old. She has court up to all her 3 year old friends and is well advanced in her speech. Follow up appointments once a year are to the eye doctor and her development checkup. She is also a big sister to our one year old daughter Jorja (who was born full term).
Advice From Parents: Try and stay positive we really do have wonderful doctors and nurses in our hospital system and have lots of family support around you (if possible).
Premature Babies Name: Azaan
Gestation Born: 26+5 weeks
Weight When Born: 796 grams
Length When Born: 33cm
Current Age: 8months
Current Weight Now: 6.5 kgs
Babies Outlook/Ongoing Issues: Azaan was born very unexpected after a massive bleed and then membranes rupturing. I was lucky enough to last 6 days in hospital before i was taken in for a emergancy c-section. I didnt get to see my baby until the next day. Azaan had all the premmie related things, PDA, 3 blood transfusions and chronic lung disease. We took our baby boy home after 89 days in Monash Medical Center, made up of 56 days in NICU and 23 in Special care.
Azaan is doing really well now, he is a bit delayed in some things, he hasnt yet rolled over but he said mum for the first time last week. He still has a small PDA but it doesnt affect him. We still see Paeds every 6 weeks and will keep doing so until he is about 13. Azaan sits on the scale about 25% for weight and 50% for HC and 10% of length…. other than that, he is perfect…
Advice From Parents: This is the hardest time of your life, once you get through this you can get through anything. Stay strong, do lots kangaroo care as much as possible as it does help you and your baby. Take lots of photos because as it may not seem like it now but the memories do fade as new beautiful memories take over. Take some time to relax and remember you didnt do anything wrong, this was not your fault.
Premmies Name: Jody
Gestation Born: 26+3 days
Weight When Born: 1030 grams
Length When Born: 37cms
Current Age: 35 weeks gestation
Current Weight Now: 6 pounds
Babies Outlook/Ongoing Issues: My baby Jody was born at 26 weeks and 3 days he weighed 1030 grams just over a kilo . He has been in hospital for 59 days now. He was on a ventilator for a week then was put on high flow nasal prongs, he wasn’t tolirating his milk at first but now is fine and is having full feeds! And now is on low flow prongs for oxygen . He is still in the s.c.n and is doing very well…. Docs say he may come home in a about 6 weeks or so.
Advice From Parents: This is one of the most hardest things I’ve ever been through… All I can really say is each day your baby will grow stronger and stronger it’s a very herd process emotionally and physically I say u need lots of support and lots of rest as I am tired 24 /7 .
Premmies Name: Jack
Gestation Born: 26+6 weeks
Weight When Born: 890 grams
Length When Born: 33cm
Current Age: 14 months corrected
Current Weight Now: 9Kgs
Babies Outlook/Ongoing Issues: Jack spent 84 days in hospital. The main issues he faced was a PDA and CLD. Jack was always pretty good at feeding and putting on weight in hospital. He was breastfeed until he was 13 mths corrected. He is still a wee little guy at 9kg and sitting in the bottom 15th percentile for his corrected age.He came home on oxgyen for 3mths and didnt need it around the time his PDA closed by it’s self. He has had a few colds and the flu once and he has just gotten over them like most kids. Jack sat up at 7 mths corrected, crawled at 9 mths and he is now cruising (walking) next to the furniture. We have been told he has some delays in his gross motor. Jack says some words now (mum, dad, bub, ta, moo, woof, baa baa, car and star)and he babbles all the time. A really amazing little boy!
Advice From Parents: Find other parents who have gone through smilair experince. Everyone’s story is different but it helps being able to share your story.
Premmies Name: Jaxon & Kallan
Gestation Born: 26w+6d
Weight When Born: Jaxon 950g & Kallan 6.50
Length When Born: Jaxon 33cm & Kallan 30com
Current Age: 3 years old
Current Weight Now: 13 kg
Babies Outlook/Ongoing Issues: My twins were born at 26w gestation, their outlook was not very good as I was diagnosed with twin to twin transfusion syndrome, Kallan being the donor (smaller one) and Jaxon the recipient. They were given a very small chance at survival. When born both were ventilated, 2 days old Kallan started CPAP, at the same time, Jaxon was doing well so they trialled him on air, he didn’t do well, his left lung collapsed and right lung popped! My babies heart stopped beating and it took doctors a lot to revive him, he ended not being able to breath on his own, he was hooked up to the highest ventilation machine, that made his whole body shake while he lay there. He suffered extensive brain damage and at 8 days old at 6.35pm Jaxon Dylan first born of twins passed away, his brother is doing great it will be his fourth birthday this Monday 16th sept.
Advice From Parents: Don’t give up! Your strength means everything to your baby 🙂
Premmies Name: Ellalouise Hayton
Gestation Born: 26+2 weeks
Weight When Born: 465 grams
Length When Born: 31cms
Current Age: 26 months
Current Weight Now: 8.4kgs
Babies Outlook/Ongoing Issues: Apart from the normal development issues premmies can face with being behind in stages. Ellalouise is doing better than I had imagined. She is so smart and more so than the age she is. She has no long term health issues. Ellalouise is just a tiny gorgeous girl who will eventually grow through the ages.
Advice From Parents: Be strong not only got your little one but for each other. Take it day by day. Your baby will get through their stages of life whether it may take a little more time, every baby is unique.
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