By Rebecca Drew
THIS inspirational mum gave birth to her son at just 26-weeks after she developed a rare life-threatening pregnancy condition which is only cured by delivery and saw her newborn spend ninety-nine-days in intensive care.
When Jackie Mangiolino and her husband Mike, both 31, from Bellmore, New York, USA, fell pregnant they were ecstatic after spending years building up their businesses before starting a family.
Despite feeling wonderful throughout much of her pregnancy, Jackie had borderline high blood pressure. Her blood pressure was monitored daily, as it is a symptom linked to HELLP syndrome, a rare liver and blood clotting disorder which stands for haemolysis, the breaking down of red blood cells, elevated liver enzymes or proteins and low platelet count.
When Jackie noticed that she was becoming very swollen and had gained 10lbs in a few days, she checked her blood pressure and found it to be dangerously high. She was in and out of hospital for several days before HELLP syndrome was diagnosed. On one of the days where she discharged, she found out her platelet levels had dropped, but not critically.
At a GP appointment the next day, protein was found in her urine and after a restless night with painful indigestion, Jackie was admitted to hospital for the final time, having contractions and had developed HELLP. Doctors worked hard to keep her stable for six days, prolonging the birth for as long as possible.
“There is no way to determine how HELLP syndrome is developed and it’s considered a random, unpreventable illness,” said Jackie.
“When I took my blood pressure, it was dangerously high, so we went immediately to the hospital. I was in and out of the hospital for several days before the HELLP syndrome became apparent. I was extremely lucky to have caught it so early.
“My doctor trusted my instincts and urged me to continue taking my blood pressure, to stay off of my feet as much as possible, and not to hesitate to call if I felt off. Over the course of the week I only grew more anxious and more swollen.
“I gained over 10lbs in just a few days. I took my blood pressure and it was extremely high so we went immediately to the emergency room. My blood pressure eventually came back down, but we noticed that my platelet levels had dropped slightly. It was the very first time I had ever even heard of HELLP syndrome.
“I remember my doctor said, ‘well, Jackie, your platelet levels are a little low, which could be nothing. Or, it could be this nasty thing called HELLP syndrome. We don’t see HELLP often, but let’s be careful, OK?’
“After being discharged from the hospital, I followed up the next day at my doctor’s office. At that visit we discovered protein in my urine, which indicated preeclampsia, so I went back to the emergency room.
“When they tested my urine in the emergency room there was no longer protein, but they did notice my platelet levels had dropped a little bit more. Since everything was still low risk, I was sent home.
“That night I had really bad indigestion, which felt like pain on the right side of my chest. I called my doctor at midnight and she urged me to go back to the hospital.
“When I got to the hospital I was having contractions, my platelet levels dropped, my liver enzymes were elevated, and my red blood cells were breaking down. I had HELLP syndrome.
“I was immediately admitted and assigned the most elite doctors in the hospital. At that point, I had no idea how sick I was and that I was battling for my life. I was given steroid shots to help my son’s lungs develop as quickly as possible, and put on an aggressive magnesium sulphate drip to help prevent a stroke.
“After twenty-four hours I had stabilised, but it became a waiting game for the HELLP to begin progressing again. Once it began to progress, we knew it would be life threatening and that we’d need to deliver the baby via emergency c-section.
“I was admitted to the hospital at twenty-five-weeks pregnant and I knew our goal was to stay stable and not deliver for as long as possible. We monitored the baby closely, and it was a huge sense of comfort to see that, while I was sick, he was still growing and healthy.
“Mike and I made a decision very early on to find as much joy, light, and happiness as we could on the journey.
“On the night of May 25, 2016, I began to feel unwell again. I couldn’t pin point the unwell feeling other than saying that I felt unlike myself, very anxious, and that I had an extremely stiff neck.
“My husband stayed with me at the hospital that night, where I couldn’t sleep and grew more and more uncomfortable. In the morning, when the entire team of doctors came into my room, I knew the HELLP was back. I just knew it. My nurse held my hand and cried with me, an hour later, when I was wheeled down for the emergency delivery.”
Jackie and Mike’s son Richie was born weighing just 2lbs 2oz and cried as soon as he arrived in the world and spent the first 99-days of his life in an intensive care unit and has not suffered any major setbacks.
The couple would love to grow their family some more but are focussed on Richie and Jackie’s health.
“He is amazing! We were so lucky that he did not suffer any major setbacks in the NICU, he had no brain bleeds, no heart deformities, no vision or hearing damage – he’s just amazing,” added Jackie.
“He does have some chronic lung disease from being on oxygen for a long time during his NICU stay, but it’s something we’re hopeful he will outgrow. Right now, he’s developing beautifully with the help of a team of therapists ranging from physical therapy to speech therapy. He’s intelligent, curious, happy, and full of joy.
“There is no concrete plan beyond enjoying each day to the fullest. Right now we are focusing on both Richie’s health and mine, and while we would love to have more children in the future, we won’t make that decision alone.
“I had no idea I could experience such a profound love, and no idea I could also experience daily grief at the passing of time.
“I’m desperate for each moment to last forever, and yet cannot wait to see what tomorrow will bring. Time is both a thief and a gift, and I can’t make sense of it. That is the most challenging, by far.”
Jackie says people comment on how relaxed her family is and know nothing about the journey they’ve had to be together and says she would be there to support every mother and father if she could.
“It’s funny, people tend to comment about how happy and relaxed we are as a family, and about how lucky we are that Richie is an easy-going baby. They have no idea what we’ve been through,” she said.
“There isn’t much you can say to other HELLP survivors. Or to any other parent who has had their image of a perfect pregnancy shattered, for any reason.
“The nurse who wheeled me down for my delivery will live in my heart forever. She told me her daughter was born, over twenty-five-years-ago, at just twenty-six weeks and then she held my hand and cried with me.
“It was a brief, deeply meaningful exchange that I will always remember. If I could hold hands with every mother or father who needs their hand held, I would.”
To follow the Mangiolino family, see @sincerelymangiolino on Instagram.