Lucy Fredricks looked forward to the birth of her first child. The first few weeks of the pregnancy were blissful. However, the journey became a bit bumpy along the way.
But she could not put her finger on what had changed. She attended all her ante-natal clinics and was given a clean bill of health. But the uneasy feeling that something was wrong persisted. It initially started with fatigue then later blurred vission and swelling of hands and , feet and face. She also couldn’t hold food down and kept vomiting. Then her weight began oscillating abnormally. “I began losing weight. Then a sudden weight gain from 65 Kgs to 83 Kgs in less than a month,” she remembers.
A pain in her chest-area became a concern. It was misadiagnosed as gastritis, an inflammation of the lining of the stomach. When her blood pressure remained unusually high, this raised a high suspicion index prompting further tests that showed that she had severe pre eclampsia and HELLP syndrome.
At 29 weeks, she was not yet ready to meet her daughter. It was a frantic rush to the hospital. But the only treatment of HELLP syndrome was to increase her platelet count, manage the high blood pressure,boost the baby’s lungs and deliver the baby. A premature baby is born too early, before 37 weeks of pregnancy are completed.
Lucy Fredrick is a HELLP champion
Lucy was admitted in hospital with low platelete below 50,000 per per microliter of blood. This condition is known as thrombocytopenia which means you don’t have enough platelets, the cells in your blood that stick together to help it clot. She also had high blood pressure that needed to be stabilised before she underwent any surgery. Lucy understood the urgency of her case when she was prepared for a cesarean section two days later. And even as she had a cesarean wound fresh from the procedure in under 24 hours, she gathered the courage and wanted to see her daughter. Her newborn daughter was 1.2 Kgs at birth.
But she couldn’t see her newborn. Not yet. The young one had some complications and was in the newborn intensive care unit.The photos from her husband’s phone worked for the first 24 hours to console her that their baby was fine. She looked forward to the all-encompassing joy when she met her daughter. She named her Michaela , Hebrew Feminine form of Michael which means, ‘like God’ She looked big and healthy on the phone screen but nothing prepared her for the reality of giving birth to a premature baby. The skin looked thin and transparent. She had trouble breathing and she cried softly.
She was also on a breathing assistance technique called CPAP (continued positive airway pressure) whose purpose was to temporarily to support her breathing. She also had a central line IV for her drugs, a blood-oxygen monitor, a feeding tube and a maze of tubes and wires that only the nurses and doctors understood the purpose each of them served.
Lucy decribes her first moments meeting her daughter, Michaela.
“She was too tiny to be real. She was fragile, I couldn’t hold her due to the network of wires and she wasn’t feeding well. She couldn’t hold down the two milli litres of milk being fed to her,” Lucy remembers. But she had to remain emotionally strong.
She describes her experience at the NICU as a life-changing moment. “Everytime she gained some grammes, it was a major celebration. When she moved from the incubator to the cot, this was a good sign” she reminisced. Each milestone she made, albeit small, was a step closer to going home.
At one point, Lucy blamed herself for her baby being born premature. But the medical team remained quite supportive and assured her that baby would be fine if she remained positive-minded. “The positivity really helped me. I needed to be strong for her,” says Lucy as she looks back at the experience.
What is HELLP syndrome?
Reproductive health expert Dr Simon Kigondu notes that HELLP syndrome causes damage to the liver and is characterised by the destruction of red blood cells, elevated liver enzymes and a low platelet count.
It is a life-threatening condition that is described through the acronym HELLP. It causes problems with your blood, liver and blood pressure. The following things happen;
- H-(hemolysis, which is the breaking down of red blood cells). These cells carry oxygen from your lungs to your body
- EL-elevated liver enzymes. These increased mean that there is a problem with the liver
- LP-(low platelet count) Platelets help your blood to clot.
It is still unclear on what causes HELLP syndrome but it usually begins during the last three months of pregnancy or shortly after childbirth. There is also no identified way to prevent the condition.
A 2014 paper by C.A Kirkpatrick in the International Journal of Clinical and Laboratory Medicine notes that about 70% of cases develop before delivery, the majority in the third trimester of pregnancy; the remainder within 48 hours after delivery.
“The recognition of HELLP syndrome and an aggressive multidisciplinary approach and prompt transfer of these women to obstetric centres with expertise in this field are required for the improvement of materno-foetal prognosis,” reads an excerpt of the paper that calls for a high suspicion index to treat and manage HELLP to save both mummy and the baby.
Dr Kigondu notes that the management of HELLP syndrome is a tough balancing act that should aim at a final result of a healthy baby and mother.The signs and symptoms can easily be confused with preeclampsia. However, a higher suspicion index is encouraged to get prompt treatment and better management. The signs and symproms are;
- Nausea/vomiting/indigestion with pain after eating
- Abdominal or chest tenderness and upper right upper side pain (from liver distention)
- Shoulder pain or pain when breathing deeply
- Changes in vision
Who is at risk of getting HELLP syndrome?
Pregnant women who have previously had preeclampsia have a higher chance of getting this condition. Other risk factors include; having high blood pressure, being obese, over 35 years and having diabetes or kidney disease.
Obstetrician Gynaecologist Dr Nelly Bosire says that in women who have had previous preeclampsia and HELLP syndrome, it is important to inform the medical team to prepare for better management in case of recurrence.
Treatment and management
The diagnosis of HELLP syndrome is made through a blood test that looks at the liver function of the pregnant woman. According to Dr Bosire, the definitive treatment for women with HELLP Syndrome is the delivery of their baby. The medical team should initiate specialised care of the newborn and close surveillance of the mother should be continued for at least 48 hours after delivery.
The definitive treatment of HELLP syndrome is the delivery of the baby
Lucy admits that the moments between a HELLP diagnosis and the birth of her baby were anxious moments. But she is grateful for a team of mothers who had previously given birth to premature babies, walked the journey with her. Kangaroo Mother Care, also helped a great deal to bond with Michaela and encourage her growth. KMC is a method of care of preterm infants which involves infants being carried, usually by the mother, with skin-to-skin contact.
There were even more anxious moments when she was discharged from hospital but her daughter had to stay on for a couple of more weeks. “I expressed milk and would take it to hospital. I was excited to see her feed on my breastmilk and gain even two grammes…It was like a graduation every single day,” Lucy remembers.
“We did Kangaroo Mother Care when she started breathing on her own and it helped deal with the reflux. It was also a great bonding nmoment when we went home,” Lucy remembers.
When her daughter came home, the hardest part was to limit the number of visitors to prevent infections on the baby who came a bit too soon hence vulnerable to infections. Today, her daughter is three years old and she acknowledges that the journey has been worthwhile.
She is part of a vibrant community of mums whose babies came abit too soon. “Preemie love Foundation is a family where we share our journeys on taking care of premature babies. We laugh and cry together, then laugh again because we go through similar experiences yet in a very unique way, ” Lucy said.
On the same note, Lucy shares a few etiquette tips when visiting a mother who has just had a premature baby, also informally known as a preemie.
- Limit the number of visitors who visit your home (its okay to decline the visitors)
- Limit the number of people who hold the baby in the household?
- Avoid taking the baby to crowded places
- Wash your hands before holding the baby
- Make sure adults who hold the baby are immunized against pertussis and whooping cough
- Be careful with comparisons; premie babies meet the milestones at their own pace
- Keep the baby warm
- Visitors should not stay too long when visiting to allow both mummy and the baby to rest
- Do not take photos of the child against the parent(s) wish
- Avoid the prying questions. The parents are also trying to navigate the same world
- No unsolicited advice, please
But Lucy’s story does not end here….
When it was time for her second baby, she was on the look out for the warning signs of both pre eclampsia and HELLP syndrome. The condition did not re-occur. Today she is grateful that she lived to tell her story on surviving HELLP syndrome.
And she is helping other mothers recognsie the signs and symptoms early enough.