Baby Harper suffers from severe Spina Bifida and Chiari 2, and needs in utero surgery in Australia.
Auckland
We are friends of Catherine, Paul and their 3 year old son Jackson Harper and we are trying to help them raise the funds for their unborn baby son’s/little brother's surgery.
(Please see updates further down on this page, we update regularly as further news / updates occur.)
Baby Harper has been diagnosed with severe Spina Bifida myleomenigeocele and Chiari 2 malformation. Fetal Surgery during weeks 19-26 of pregnancy can help reduce the potential risk of brain damage caused by hydrocephalus (when excessive cerebrospinal fluid accumulates in the brain). Spina bifida is a birth defect where there is incomplete closing of the backbone and membranes around the spinal cord. Myelomeningocele, also known as open spina bifida, is the most severe form. Associated problems include poor ability to walk, problems with bladder or bowel control, hydrocephalus and a tethered spinal cord.
Fetal Surgery during weeks 19-26 of pregnancy can help reduce the risk of death and brain damage, can improve Baby Harper's chances of walking by 80%, can reduce future hospital admissions and surgeries and can improve his quality of life.
This groundbreaking new surgery was performed in Australasia for the first time just a few months ago at Mater Mother’s Hospital in Brisbane: http://www.stuff.co.nz/national/health/82560576/Kiwi-mums-offered-hope-after-in-utero-spina-bifida-surgery-breakthrough
The surgery is not available in New Zealand, so to give Baby Harper the best chance in life, Catherine and Paul will travel to Australia and privately fund the surgery (more details on costs to come). They have applied for funding from the NZ/Australian governments but have yet to hear back and cannot wait any longer as the surgery needs to be performed now (Catherine is already 23 weeks pregnant).
Baby Harper will be the first New Zealander to ever receive this surgery. As well as raising funds for the surgery and the other operative care Baby Harper will need, we are also hoping to raise awareness so that this surgery can become available here in New Zealand. Any extra donations will be donated towards Spina Bifida Research.
Catherine and Paul will fly to Brisbane for testing and consultations on Sunday 18 December 2016 and surgery is booked for 29 December (the specialist has pulled his team from holidays just to perform this groundbreaking new surgery!) Following the surgery Catherine and Paul will have to spend at least 3-4 weeks in Brisbane, if they can return to New Zealand Catherine will have to be on bedrest until baby Harper is born. We will continue to update the page with new information about Baby Harper's treatment as we receive it.
*UPDATE* 20 December 2016
Catherine, Paul and Baby Harper just had the associated pre-op tests today in Brisbane with the specialists, they did MRI scan and in depth ultrasound. Baby Harper's ventricles in his brain have increased and are getting close to the cut off of what they will operate on. All the details will be sent to the Vanderbilt hospital in USA and they will check through the case and make sure Baby Harper still meet all their criteria for surgery, the surgeon in Brisbane said that with the increase he would put the potential for surgery at a 50/50 chance... The surgeon in Brisbane should have heard back from USA before Christmas, at this point the surgery is still booked for the 29th of December. So time to pray that Baby Harper get the surgery. Catherine and Paul are very anxious and we will keep you all updated as we hear about any news. Paul and Catherine would like to thank you all from the bottom of their hearts for all your love and support, it means the world to them.
*UPDATE* 24 December 2016
The most amazing Christmas gift just arrived! Surgery has been approved and the surgeons in USA are of the opinion that surgery would be very beneficial for Baby Harper and they have therefore recommended the team in Brisbane to go ahead with the surgery. Catherine and Paul are of course both ecstatic and scared. They are so grateful to every single one of you whom have donated or shared their story, thank you all so much, and Merry Christmas! We will keep you all updated come surgery day 29th December.
*UPDATE* 03 January 2017
The surgery was successful and baby Harper is yet again safe inside his mum, and we hope he decides to stay there for the next 13 weeks. Everything went according to the surgery teams plan, and Catherine spent 5 days in intensive care but is now recovering on the ward at Mater Hospital. Catherine and Paul would like to thank you all for your messages, prayers and donations, it means so much to them and baby Harper. The results from the surgery will be monitored in the weeks to come, we will keep you all updated. We are hoping that this will result in surgery becoming more readily available for NZ families in need. Again, thank you from the bottom of our hearts.
*UPDATE* 23 January 2017
Amazing news, Catherine and Paul had a scan done today and the Chiari Malformation in baby Harpers brain has started to reverse! By definition Baby Harper does no longer have a Chiari 2 Malformation, however there is still room for improvement. They are over the moon and are so relieved that the pain and struggle with the surgery has made a positive impact on Baby Harpers condition. Baby Harper still has fluid on his brain but this is also common after surgery, so we are hoping that this will be reversed too. Baby Harper is still kicking and moving a lot in the womb. Catherine and Paul again want to send their love to you all, words can not describe how much your support has meant to them.
*UPDATE* 08 February 2017
Catherine and Paul are back home in Auckland! They are so happy to be reunited with their family and everything so far is going well. Catherine is 30 weeks pregnant now and hopefully baby Harper will want to stay in mum's stomach for another 7 weeks! So far the specialist in Auckland are happy with the progress and we will update you all when we have further news.
Thank you all so much for your support!
We have started up this page for Baby Harper as he, like all of us, deserves the best chance in life. Catherine, Paul and Jackson are very close friends of ours and we want to do everything we can to help them help Baby Harper.
Funding News 11 February 2017
We have received fantastic news from Auckland Hospital, the Ministry of Health has decided to fund the cost of the surgery for baby Harper, which is obviously a huge relief for Paul and Catherine.
Any donations will go towards the travel and accommodation costs that still need to be privately paid for, all donations will be allocated to baby Harper's continued and future care and surgeries, physiotherapy, equipment and therapeutic resources as we want to ensure we give baby Harper the absolute best chance in life, and the opportunity to be able to provide extra / non funded resources will be hugely beneficial to his development. Any donations not needed for Baby Harper's personal care will be donated towards Spina Bifida research and / or other families in the same position.
Catherine had her weekly ultrasound on Thursday and Baby Harper has still got large ventricles, so there is still the possibility that he will need to have surgery straight after birth to place a shunt to drain the fluid, although his overall condition is stable at the moment. Fingers crossed!
Again, thank you all from the bottom of our hearts, we are so grateful for all the support and it really means the world to Paul and Catherine and especially Baby Harper.
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