Wednesday, February 1, 2012

Celebrate Pippa’s birthday


It's coming up to Pippa's first birthday.  A year does little to lessen the joy we felt at her birth and the impact her loss had on us, individually and as a family.

We’ve considered how we could honour Pippa and immediately thought of donating blood

Join us in donating blood or plasma throughout February (which is Awareness month for Congential Heart Disease) and you could save the life of someone just as precious as our daughter.

For more info or to make an appointment visit www.donateblood.com.au (quote “Pippa Raine” to the Red Cross for your donation to count toward our tally). 



On a related note, several friends have asked what our preferences are for cash donations.

Our strong preference is that donations be made to the clinicians and researchers at the Heart Centre for Children at Westmead Childrens Hospital.

If you would like to help families affected by CHD more directly, a wonderful charity - Precious Hearts - assists with the cost of medication, meals, accommodation and fuel, as well as care packages for children hospitalised by CHD.

We would also ask you keep in mind Heartfelt, a very special organisation which creates photographic memories for families of critically ill or deceased children.  Some of our favourite Heartfelt photos are below:




With thanks,
Justin, Erin & Trigby

Tuesday, February 22, 2011

Pippa's Funeral

Pippa's funeral was yesterday.  It was very nice.  Thank you to everyone who joined us.
 
Here is a copy of the Order of Service.
 
*     *     *
 
Pippa's Eulogy:
 
For us, Pippa personified hope:

·         the hope that grows in parents planning their family;

·         the hope that blossoms when that first test is positive;

·         the hope that steels itself when the world is turned upside down;

·         the hope that holds on through the darkest times;

·         the hope that may one day re-emerge and grow again.

Pippa was a planned child – someone to be a playmate, friend and side-kick for Trigby.  The positive pregnancy test was more than happy news.  It was the end of long months of drug cycles and hormonal tempests.  We knew the pregnancy would be tough – Erin's body does not take kindly to visitors – but our experience with Trigby had shown us that the months of debilitating illness Erin would experience could be soon left behind with the new arrival.

A routine scan at 13 weeks brought everything crashing down around us.  There was a defect in the baby's heart – an exact diagnosis was impossible, but it looked like Hypoplastic Left Heart Syndrome. Would the baby survive? Would the baby even get to term?  What should we do? We did not know.  Dr Vijay Roach guided us though this period with the wisdom and compassion we needed. Under his care we came to face the reality that our baby would be different.

Vijay sent us to cardiologist Dr Gary Sholler at the Children's Hospital Westmead. It was a long six weeks before the baby developed enough for Gary to get the view he needed to confirm the diagnosis in the 19 week scan.  It was HLHS.  Poor Gary bore the brunt of Erin's withering cross examination, as the pages of closely typed questions emerged.  Gary's patience and understanding were remarkable and we will always be grateful to him for his care.  He explained the HLHS did not need to be a death sentence.  It could be treated.  It would be a long and difficult process, but there was hope – hope for our baby to lead a life not too dissimilar from any other child.

Gary sent us to Dr David Winlaw, the surgeon who would operate on the baby. By now we knew we were having a little girl and we were tired of hearing about "the foetus".  Our little girl would be Philippa to the world, but Pippa to us.  David explained to us that the HLHS defect, which had been fatal until the mid-80s now had survival rates of about 80%.  By the age of five, HLHS children were going to school, playing in the playground and leading 'normal lives'.  Children born with HLHS in the late '80s were now having children of their own.  There was hope for Pippa.

Erin came under the care of Dr Neil Athayde, who would handle the delivery.  Pippa came under the care of a large team of doctors, nurses and technicians led by Doctors Sholler and Winlaw.  Hopes were high.  Plans were made.

But things don't always go according to plan.

At about 30 weeks, during a now-routine monitoring scan, Dr Sholler detected a second anomaly – Intact Atrial Septum.  Pippa's already compromised circulation was being impeded by a valve that wasn't supposed to close until after birth.  This defect would cause damage to the heart and to the lungs during the remainder of the pregnancy – damage that could not be stopped or accurately measured.  We would not know how bad it was until she was born.  We heard the phrase "not uniformly fatal".  We were told that the odds had basically been cut in half. 

But half of good leaves room for hope.

The last weeks of the pregnancy were not easy.  It is hard to prepare yourself for the unknown, especially where the best case scenario is frightening in itself.

Many of you will have read Pippa's blog as the events unfolded.  We chose to put her story there for all to see, so that those who wanted to could understand what she was going through.  It was also our link to the outside world during a dark and difficult time.  The messages we received from you helped us, hour by hour, to maintain our hope.

The medical and surgical team led by Dr Winlaw at the Children's Hospital are the most dedicated and inspiring people we have ever met.  We are eternally grateful for everything they did for Pippa.

Pippa lived for 6 days, 5 hours and about 25 minutes – about 149½ hours in all.  It is hard to come to terms with a life on that scale.  What can you do in 149½ hours?  It's perhaps longer than you think. You could watch the Lords of the Rings film trilogy and every episode of M*A*S*H, re-live every Melbourne Cup race and listen to the entire Beatles catalogue and you would still have a little time to spare.   Pippa didn't do any of those things but she did give us a lifetime of memories – her lifetime – and those memories run the gamut of emotions.

Pippa tried as hard as she could to stay with us but she just couldn't.  We have to let her go, with the hope that her short life and the lessons that can be learned from her might help those that follow.

She is not the only one who is heartbroken.

Wednesday, February 16, 2011

Funeral arrangements for Philippa Raine

Thank you to everyone for your support and messages over recent days.

We will farewell our beautiful Pippa at a short open service next week:

Monday 21 February 2011, 1.15pm
Plassey Rd, North Ryde
(refreshments to follow)


In lieu of flowers, we would be grateful for any support you could offer to:

The medical staff who cared for Pippa and the researchers who will help other children like her in the future, via The Heart Centre For Children; and 
Those who need blood and blood products, via The Red Cross Blood Service.


Erin & Justin

Tuesday, February 15, 2011

Philippa Vivienne Raine 9/2/11 - 15/2/11

Our beautiful girl died this afternoon at about 2.45pm as her cardiac catheter procedure was coming to an end. Pippa's heart stopped and could not be restarted. There was nothing more that could be done.

We were with her at the end.

We will post funeral arrangements in the coming days.

Day 7

Pippa has just reached Day 7. She is really struggling.

The doctors are giving her everything they can and it is just holding her stable. Her condition cannot be maintained indefinitely and she keeps losing ground. Eventually the medications won't be enough.

A last ditch cardiac catheter procedure is being planned for this afternoon to try and improve circulation and oxygenation from inside her heart and major arteries. It is extremely high risk but at this stage we have to go all in.

Pippa is a little cold this morning so it was time to break out more of Nana's knitting.

Monday, February 14, 2011

Update

Pippa through her procedure okay. Some fluid taken out of her pleural cavity.

It seems to have had a positive effect but we have to see how she settles down.

Update

Pippa is having a small procedure right now to drain some built up fluid from her chest. This is a fairly common thing. The surgeon goes in through the existing chest wound to save having to break her skin again.

Hopefully this procedure will help bring up her oxygenation a bit.

Day Six - Congenital Heart Defect Awareness Day 2011

Pippa has just entered her sixth day.

She had a quiet night and we were able to get some sleep in the hostel.

She is maintaining a degree of stability but she is still right on the edge. She has made up a little ground, in as much as she has been weaned off some of the medications, but that is not a lot of wiggle room for the doctors if she has further difficulties.

She is quite puffy today but that should reduce with a diuretic.

Pippa will be having a variety of scans this morning. She doesn't seem to like being handled, so it could get exciting.

Sunday, February 13, 2011

A visit from a very excited and confused big brother

We were able to have Trigby in for a couple of minutes to meet Pippa.

He doesn't understand what is going on but he hadn't seen his Mum since Wednesday morning or his Dad since Thursday night. He knew who Pippa was and pointed when we asked him "where's Pippa?"

There were some tears when it was time to leave.

It is very tiring and difficult being here watching Pippa struggle on. We are both very emotional.

Day Five photo and update

Pippa has been off life support for 24 hours and it had not been easy going.

She goes through periods where she is holding her own quite well punctuated by periods of dramatic instability.

She is receiving everything they can give her so there is no wiggle room. The doctors and nurses are doing a great job of monitoring and reacting to her rollercoaster-like fluctuations.

There remains no end in sight.