Patrick Short
NEC Society - in memory of Hazel Short
Fundraising for Necrotizing Enterocolitis Society
Story
On June 8th, we welcomed our two girls, Raya and Hazel into the world. Before their big day, they had a long road. At 18 weeks into the pregnancy, we found out that the girls had twin-to-twin transfusion syndrome which was causing Raya to receive less blood flow and be under-nourished, and Hazel to get extra blood flow, adding stress to her heart.
We were lucky to be referred within a day to the world-expert on this condition and inventor of the laser surgery treatment that is now used worldwide, Prof Kypros Nicolaides. Through two laser surgeries and a period of weeks full of ups and downs where we were told we might lose both girls, Prof Nicolaides and his team saved both of their lives. However, as a result of the period of imbalanced blood flow, both girls had heart conditions that we knew may need treatment after birth. Hazel in particular had a serious condition called pulmonary atresia, where one valve in the heart will not open, preventing blood from being pumped to her lungs.
We made it to 37 weeks, with a scheduled cesarean section at Guys and St Thomas and a team of about 20 doctors, nurses, and midwives looking after Timarie and the girls during the operation. We knew that Hazel would almost certainly need a heart operation in the days or weeks after the surgery.
Both girls were taken straight to the neonatal intensive care for heart scans and monitoring of all their vital signs. Raya recovered relatively quickly, spending a total of two 2 nights in intensive care and 3 nights in the ‘special baby care unit’ before she could come out of the hospital to be with us.
Hazel was put on breathing support due to her heart issue, and on a drug that kept her arterial duct open after birth. This duct normally closes on its own shortly after birth, but for Hazel it had to be kept open to allow blood to bypass the blocked valve to get to the lungs through another route while she stabilized and prepared for her operation.
One day prior to when the operation was scheduled, the doctors and nurses noticed Hazel’s belly was bloated. An X-ray showed that her belly was full of air, which was expected given the breathing support she was on. However, less than 24 hours later a second X-ray showed early signs of necrotizing enterocolitis (NEC), a condition that affects premature babies, and babies with poor circulation (like Hazel, with her heart condition), where the intestines and gut begin to die due to lack of blood flow.
Hazel was scheduled within hours for an emergency surgery to investigate the extent of the damage to her gut, and determine whether surgery was necessary or possible to help her. The doctors performed a colostomy, pulling a section of her intestines out externally to relieve pressure of the downstream segment, and the doctors were positive on Hazel’s prognosis after the surgery. They found that none of her gut was dead, although large sections of it were clearly on low blood supply and at risk of dying soon. They told us that the next 48 hours would be critical - either Hazel’s gut would begin to improve based on the intervention, or it would not, in which case they would likely need to operate again.
Unfortunately, Hazel did not have 48 hours. Less than 12 hours later, at 6:21am on Saturday, June 18th, we got a call from the hospital asking us to come in urgently. We were staying just 5 minutes away at the Ronald McDonald House, and I will never forget the pit in my stomach that I felt on that walk over.
The doctor confirmed our worst fear, that we were going to lose Hazel. Her condition got significantly worse over night, and the doctors and surgeons agreed that there was nothing that could be done to save her. She passed away 7 hours later, taking her last breaths completely peacefully in Timarie’s arms with her sister next to her and my arms around all three of them.
We’re heartbroken, but we are getting through it together. Raya is such a ray of sunshine through it all providing lots of joy and laughter through each little expression and noise she makes.
We are determined to make something positive out of all this, and are going to make a donation in Hazel’s memory to two different charities, and if you would like to contribute we’ve included a JustGiving links below:
The Fetal Medicine Foundation, which funds Prof Nicolaides and other researchers. They saved Raya’s life, and gave Hazel a fighting chance at hers, and for this we will be forever grateful.
The NEC society. This devastating condition which took Hazel’s life is one of the most common causes of death in newborns. It takes the lives of about 9,000 babies per year in the U.S. and hundreds of thousands worldwide. If our donation can fund research that saves one child’s life, and saves a family from this heartbreak it will all be worth it.
Thank you all again for being such great friends and colleagues. Your words of support mean a lot, and if you’d like to donate then please find the links below.
JustGiving for the Fetal Medicine Foundation: https://www.justgiving.com/
JustGiving for the NEC Society: