Yasminah’s Gift of Hope

www.ygoh.org.au

Yasminah’s Gift Of Hope offers Hope, Light, Love and Happiness to families who experience the miscarriage, premature birth, neonatal loss, stillbirth or infant loss of their child or diagnosis of a congenital abnormality during pregnancy with early ongoing support, understanding and a Gift Of Hope.

Yasminah’s Gift Of Hope Journals are a very special keepsake that allows families to keep ultrasound images, photos, cot cards, arm bands, and foot and hand prints as a cherished keepsake of a precious life. Each journal contains a special page that the family can fill in about details of their child like name, date of birth, place of birth and details of the funeral or memorial service if their child has passed away. We encourage families to write about their journey. The family may like to keep it is a diary during their pregnancy after being told their child has a congenital abnormality, a journey through the roller coaster ride of a Neonatal Intensive Care Unit when their child is born premature, or life after the loss of their child. Some other uses are to write about the birth of their child, write poems about how they are feeling, write a letter to their child and keep any cards or messages received from family or friends.

Most importantly families can write down details and memories about their child to treasure forever. A Gift Of Hope.

Yasminah’s Gift Of Hope Incorporated provided our first Gift Of Hope on the 26th May 2010, exactly 1 year and 2 months after Yasminah was born sleeping. Yasminah’s Gift Of Hope became a registered non-profit charity endorsed by the Australian Tax Office as a deductible gift recipient on the 13th July 2010. We are comprised of volunteers who have personally experienced the loss of a child, diagnosis of a congenital abnormality or the premature birth of their child, who are dedicated and passionate about providing support and understanding to families during a very difficult time.

Rebecca and Erin have both personally experienced the diagnosis of a congenital abnormality during pregnancy, premature birth and loss of their own children, and want you to know that you are not alone. Yasminah’s Gift Of Hope wish to bring families support, understanding and hope.

Join their Facebook page.

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Who We Are

The National Premmie Foundation (NPF) works to raise awareness of premature birth and neonatal loss.  Its aim is to ensure that all prem parents receive the information, care and support they need to make an extremely difficult time just that little bit easier.

The National Premmie Foundation (NPF) is the peak national organisation in Australia for parents who experience premature birth or neonatal loss. It consists of a network of individual members and member groups from across Australia making it the largest organisation in Australia representing the interests of families of preterm infants. The majority of our members are parents who have experienced premature birth or neonatal loss.

 

What does the National Premmie Foundation do?

* Raise awareness of preterm birth

* Represent the interests of parents of prems in terms of hospital policy, health policy, funding and standards of care

* Raise the profile and awareness of the plight of NICU/SCN infants and their families and the issues surrounding their care and long term development

* Work as part of an International Alliance to reduce the incidence of preterm birth

* Co-ordinate World Prematurity Awareness Month and World Prematurity Day (which occurs in November each year) activities throughout Australia

* Link parents with the group best suited to meet their need for care and support.

* Facilitate and assist with the formation of new groups so that all parents have access to the support they need.

 

Our Network of Charity Groups

The founding groups include Preterm Infant’s Parents Association (PIPA) & Loddon Mallee Kids. Our other member groups are L’il Aussie Prems Foundation,  Yasminah’s Gift of Hope, The Premmie Promise Foundation, Tiny Sparks WA and Walk with Wings.

The National Premmie Foundation was established in 2007 and together with our network, we have a combined total of over 50 years experience in supporting families who experience premature birth or neonatal loss.

Premmie Promise Foundation

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LAURA, DANIEL & MIA

Laura Rivers born at 24 wks gestation, 750 grams, 19/9/95

My darling first daughter was born at 24wks, and what a roller coaster ride it was.

Not knowing what to expect when told we were in for the long haul. It was two steps forward, one step back with her. Laura was diagnosed with NEC (necroentercolitis) at 10 days old, and required bowl surgery. She was then diagnosed with a PDA duct that needed to be closed surgically at 30 days old. With so many blood and platelet transfusions, drugs and procedures that she endured, it was amazing that she was surviving. The hardest thing to endure through all  this was that I didn’t get to hold my precious baby until she was 41 days old.

Even with her laser eye surgery at 80 days old, for Grade 3 retinopathy, it was only then that she started to feel like  she was really my baby, as after that she was taken off the ventilator and moved to Special care, that I was able to be more involved in her care. After another few weeks, we returned to ICU to have her bowel stoma closed, and finally after 120 days, we were able to take our little girl home. After spending so long in hospital, you never want to see your baby back there.

At 10 months old, about 7and half months corrected, Laura become quite sick, having trouble breathing, her little chest rattling with a nasty cough, and generally being unwell. On a weekend, as unable to get to our GP, we took her to the Royal Children’s Hospital and were admitted straight away on oxygen. It was so frightening seeing her again being hooked up to monitors, needing oxygen, and looking again so helpless. The Doctors told us that she possibly had something called RSV, but they couldn’t be entirely sure until more tests were done. Thankfully, after four days of oxygen and constant monitoring, Laura seemed to be getting better, and we were sent home with a humidifier for her room and some anti-biotics.

It was so scary having to back in the hospital environment again, it brought back so many memories and we had just seemed to have gotten her home, and there we were again with a small and sick baby. After something like that, you tend to wake up at night every time you hear even the slightest cough, whether they are a tiny baby or even now when they are a big teenager.

Now at nearly 13, Laura has the physical scars to show from her times in hospital, but it is those times in hospital that long stays in the memory of her Mother.

Daniel Rivers born at 29 wks, 5 days gestation 1730grams 12/10/98

After going through what Laura, people often ask me how we possibly could have done this again. At the time, you don’t really think of those things.

Knowing that this was a high risk pregnancy and the chances of having another Prem baby were so high, it was no surprise that Daniel tried to enter the world at 23, 25, and 26 wks. Each time we managed to convince him to stay a little longer, but at the time of his birth, doctors were amazed a how much bigger he had gotten by staying with me for those few extra weeks.

Daniel was a much bigger baby than his sister, and was doing so much better. He didn’t have to spend as long in ICU, he didn’t have the operations or as many major worries as Laura. In Special care at around 4 weeks old though, he weakened a little and was found to have caught phenumonia. The doctors were concerned that his right lung would be a little weakened by this, but after a week of really battling, he started to turn the corner and showing signs of real improvement. Although, he didn’t come home on oxygen, it was only five days before he was discharged that he finally appeared not to need it to go home with. After 66 days, we could finally go home.

After all we had been through with them, when we left with Daniel we had hoped that we our days in hospital were over.

It was again in the early part of August, that I recognised in Daniel the same type of symptoms that Laura had showed the winter she was a baby. We again went straight up to the hospital, where they showed no hesitation in taking Daniel in and immediately giving him some oxygen. It was so hard to hear that he was going to be hospitalised, and again the doctors mentioned RSV to me. I must admit to not asking as many questions, as we had done this before, all I wanted was my baby to well again and go home.

I spent the next six days sleeping in a chair next to his hospital cot, watching him struggling to breath, scared of what may happen. Although Daniel was a bigger baby and longer gestation, RSV seemed to have struck him down harder. His right lung was so weak and troubled by this nasty virus. I hated being there, wanting to go home, but fear of leaving him as he seemed to be so sick. After nearly two weeks, we finally started to see some signs of improvement and were allowed to take him home. What a relief.!

For those first few winters, Daniel always seemed to struggle with coughs and with bronchial strains. Now at nearly 10 years old, he seems to have finally beaten all those early problems.

Mia Abbott born at 32wks 4 days gestation 1380 grams 2/2/07

After such a long time between my Prem babies, it was just as much of a shock having Mia at 32 weeks, as it was having Laura at 24 weeks.

My pregnancy was a horrible nightmare, but Mia’s time in hospital was relatively easy. Not needing any oxygen or ventilation, Mia was taken straight to special care, and spent her days getting learning to feed and getting bigger.

In comparison with her sister and brother, her hospital stay was far less stressful for her. It was much more stressful for her Mum, and her time in hospital brought back so many memories of previous experiences.

After spending 38 days in hospital, Mia was discharged at 2100 grams, a small but happy and healthy baby.

Now at 17 months of age (15 months corrected), so far this winter has been by far the worst. Mia has been constantly sick with ear infections, colds, conjunctivitis, and flu’s.

It is our greatest fear that something like RSV will again hit our family, and I know that we won’t rest easily until this period is over. I don’t think that I could bear to see Mia go through what Laura and Daniel did with being re-hospitalised. We will keep our fingers crossed!

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