The ninth annual Bedford event, the IWK 5K: In Memory of Jessica, is coming up at the end of the month. I hear about it every year and I know lots of people who attend and have a wonderful time but, I have to admit, I didn't know the story behind the run. I didn't know who Jessica was and how she inspired the event.
I recently connected with Jennifer Manuel, the event organizer and Jessica's mother, and she agreed to share her story with me below. Information about how to register and/or volunteer for the event is at the end of the article.
At 16.5 weeks pregnant Jennifer and her husband Keith had their first ultrasound for her second pregnancy and discovered, to their complete excitement and joy, that they were carrying identical twins. A few days later a follow-up ultrasound was given and that excitement turned to concern when they found out their babies had Twin Twin Transfusion Syndrome (TTTS), which can occur in 10% of identical twins.
"TTTS is a prenatal condition in which identical twins share unequal amounts of the placenta's blood supply which results in the fetuses growing at different rates," Jennifer explains. "The donor baby gives too much blood to the recipient baby, which is bad for both babies. The recipient who is getting more blood and nutrients, grows more, but also has to work extra hard with all the blood, and is at risk for congestive heart failure. Because it has more blood and nutrients, it's bladder is also working harder and urinating more therefore producing more amniotic fluid. The donor baby obviously is not growing as much, and, if not urinating as much, then has little fluid around it to develop."
A week later Jennifer found out she also had a thin cervix, which can cause preterm delivery if not fixed, so she was put on bedrest and given some difficult choices to make. She could wait and see what happened and hope her cervix didn't thin further (which was unlikely), or she could do an emergency cerclage (stitching the cervix closed) which could start labour.
"We had the cerclage and it was successful. I was monitored closely twice a week with ultrasounds to observe the fluid levels and their growth," she says. "My fluid levels were very high around the recipient baby and I required an amnioreduction to drain 1600ml fluid from my uterus. I could breathe much better again. I was stable for a couple of weeks until week twenty-three when I noticed mucous. I immediately went to the IWK and was now on strict bedrest. An ultrasound showed my cervix was opening, the stitch was gone, and one of my baby's feet was trying to kick out."
The Manuels were again faced with some tough decisions.
They could allow the doctor to do a “rescue” cerclage, which is very risky with only 50% chance of success and a high likelihood of her membranes rupturing during the procedure, which would cause labour at 23 weeks before the steroid could be absorbed; they could "wait and see" and tilt the bed with her feet in the air and hope to buy more time to give the steroid a chance to absorb; or to go ahead with the delivery at that time, knowing that both twins would likely not survive.
Attached to that decision was the impossible consideration of what to do if they did have to deliver early.
"At twenty-three weeks we were told the odds of survival were low, and odds of severe disabilities was very high. We needed to decide if we wanted all measures taken with full resuscitation and hope they would survive knowing they may not have a good quality of life . . . or do we wait until delivery and have them assessed and the doctor determines if he thinks they would be a miracle baby and survive and do well . . . OR do we have the doctors wrap the babies up in blankets for us to hold and provide comfort care?"
The Manuels opted to have the emergency cerclage and Jennifer spent the next two weeks going into early labour over and over.
JESSICA AND ALYSSA
The nurses were able to stop the labor multiple times with medication until her water broke at twenty-five weeks and four days. Her identical twin girls, Jessica and Alyssa, were born on May 12, 2008 at 1lb 10oz and 1lb 15oz.
"No cries were heard," Jennifer remembers. "Both girls had a team of four health care professionals working on them, intubating them, and getting their hearts beating . . . they were immediately taken to the NICU and I could only be wheeled in to see them in my bed, my legs were still frozen from the C-Section and I had been on bedrest for so many weeks I couldn't stand."
That first night Jessica needed belly surgery.
"Her bowels were not working, she had severe necrotizing enterocolitis, her lungs were not working, her brain was full of bleeds and something called periventricular leukamalacia," says Jennifer. "She was being kept alive by the respirator and medications and her little body was unable to heal itself or stabilize. We had cuddles with her. We held her for long periods and prayed she would get better. I talked to her every day. I read to her every day. It broke our hearts when we had to say goodbye. She was given her wings June 12, 2008."
"Alyssa struggled as well, from being critically ill and close to death's door, intubated, extubated, reintubated, oscillator with nitric oxide, pneumonia, collapsed lung, a dozen blood transfusions, lung disease, infections, many apneas, many IV's and many restless nights," says Jennifer. "Alyssa finally left the NICU after 110 days, a very bittersweet moment for us all, leaving without her twin sister."
Recently Alyssa celebrated her 10th birthday.
"She is an amazing resilient little girl, with this incredibly imaginative personality," Jennifer says. "Every year on her birthday we send up helium balloons to Jessica in heaven."
During their time in the NICU the Manuels say they experienced incredible care.
"The nurses looked after our babies like they were their own. The nurses looked after us. They grieved with us and supported us in every possible way," she says. "One of our primary nurses took both of the girls' footprints before Jessica passed away and put both prints together. I use Jessica's footprints on our logo and race medals every year."
A WAY TO HEAL AND GIVE BACK
After Jessica passed away Jennifer turned to running in her grief as it was the only thing that made her feel like "herself." While running she thought about how she could give back to the hospital who had helped her through such a difficult time. She decided to run a marathon and raise money for the IWK but couldn't find what she was looking for in Halifax at the time.
"This is when I had my A-ha! moment and thought this will be the 'big' thing I do," Jennifer says. "I wanted an event for other families who felt this same gratitude we did for the IWK to walk or run in. Exercise always makes the heart and body feel better. And for families to know that their registration is going to the IWK, a place almost everyone I know has been touched by, in one way or another, means a lot."
The event is in its 9th year now and what began as a small event with family and close friends raising $4500 their first year, has grown to 475 participants and volunteers and has raised over $30,000 for the past 3 years. In total $200,000 in donations to the IWK have been raised through the event so far.
The IWK Foundation "uses the money to help with the best research and best medical equipment that the government does not pay for," says Jennifer. "For the last two years we had a very special project that the funds were directed to. A couple years ago, Liz from the Foundation asked if I wanted to donate $50,000 raised from the event to the redevelopment of the new Neonatal Intensive Care Unit so that we could have a plaque on one of the new rooms. Last year we completed our donation and room 303 in the NICU says 'In honour of Jessica and Alyssa Manuel' which is pretty amazing to have them both together where they first started."
Jennifer now volunteers at the IWK as a Parent Partner. This role is a support person for parents who currently have babies in the NICU; as she's been there herself, she can understand their challenges.
"I know when I was there I wanted someone to listen to me or who understood what I was going through, "she says. "This is just another way to reach out to families, just like the event . . . giving them the freedom to be open."
HOW YOU CAN GET INVOLVED
The event is held on Sunday, May 26, 2019 at 9:30 at DeWolf Park in Bedford. It is for all ages and is a wonderful way for the whole family to give back to an organization that is so important to our community, in honour of a local child. You can register as an individual or a team.
There is a 500m dash for little ones, a 1K, and a 5K option. It is not a timed event, the goal is for families and friends to come out and have a good time together for a good cause.
"The timing of the event is perfect because it is right around the time when the girls were born and when Jessica became very sick, so it keeps me very busy and distracted during a difficult time of the year, " Jennifer says. "The run has been very therapeutic for me to organize and to talk about. It is given me the chance to tell everyone about Jessica and be open about losing a child. Too often people feel they can't talk about losing their baby, but as we share more with each other, we realize that many other people unfortunately have been through this loss. I've had many families email me or approach me at the event to tell me about losing their child, or their experience at the IWK and that's what I really wanted from this event, is for people to share their stories."