Birth Story: ‘I was diagnosed with a rare condition’

Posted in Birth Stories.

Graces miracle baby in incubated in the NICU
For many new parents, pregnancy is a magical and wonderful time. But for newlyweds Grace and Shahil, it was anything but. What started as a routine pregnancy quickly turned into every parent’s worst nightmare.

With endometriosis, PCOS, placental mesenchymal dysplasia, gestation diabetes and preeclampsia, Grace and Shahil battled the odds to bring their beautiful baby girl into the world.

Grace shares her incredible story with Mum’s Grapevine.

New Year’s Pregnancy

Grace N's pregnancy tests

Grace and Shahil met while working in the Air Force in 2017 and quickly became the very best of friends. On New Year’s Day, 2022 Grace decided to do a pregnancy test as she had not yet had her period. “This wasn’t unusual for me as I suffer from Endometriosis and PCOS.” Grace shared with Mum’s Grapevine.

Polycystic Ovarian Syndrome, often abbreviated to PCOS, can cause irregular menstrual cycles, and to their great surprise, the test came back positive, and Grace and Shahil were going to have a baby.

“I took the test and burst into happy tears at the shock of seeing a very bright positive test. Like most other new mums, I rushed to the store and bought 10 more tests to confirm. I was so surprised as I didn’t think it would be so easy for me to fall pregnant.”

Grace and Shahil wedding day

Eight weeks into the pregnancy, Grace and Shahil got married. They were keeping their pregnancy a secret from friends and family. At 12 weeks gestation, they finally shared their happy news and were so excited they were going to be parents.

The happy couple had no idea their hectic ride to parenthood was only just beginning.

Everything was fine until it wasn’t

Grace was experiencing what could have been thought to be a typical pregnancy. Morning sickness, loss of appetite, mild cramps, and ligament pain. Scans at six and 12 weeks showed that her pregnancy and baby were tracking along just as to be expected. They had no reason to believe that the 20-week scan would be any different.

“We sat in the room whilst they measured bub; we were so excited to see our little girl on the screen moving around and that little heartbeat. At the end of what seemed like the longest appointment in the world, the sonographer said she needed the doctor to come and have a look at the results. At that moment my heart sank as we asked if everything was okay.

“The doctor and sonographer advised us that we needed an urgent appointment at the Fetal Medicine Unit (FMU) at the Canberra Hospital as the baby was measuring below the 1st percentile, and there was something extremely wrong with my placenta. We were shattered and had no idea what to expect moving forward.”

The following day, Grace was seen by two sonographers and an OBGYN at the Canberra Hospital, where they suspected it could be a partial molar pregnancy.

“We were taken into a private room and told that our baby girl was likely not going to be viable with life due to her small size and lack of growth, and that if she was lucky enough to make it to viability, she would face severe mental and physical disabilities. This was incredibly difficult to hear; how could I believe all of this when I feel her moving around and kicking inside me like nothing is wrong? It was recommended we have an amniocentesis to rule out molar pregnancy.”

‘We were recommended to terminate’

Pregnant Grace and her husband on holidays in Sydney

After agreeing to an amnio, Grace and Shahil could do nothing except wait for the results and hope for the best. What would this mean for their precious baby?

Grace and Shahil had a follow-up appointment with a private OBGYN to receive the results from the amnio. The amnio results showed that the pregnancy was not a partial molar pregnancy, which was a huge relief for the young couple, however, doctors were still encouraging a termination.

“During that appointment, I was diagnosed with a very rare condition called ‘Placental Mesenchymal Dysplasia’ which is a benign placental anomaly that causes large grape-like cysts all over the placenta leading to severe intrauterine growth restriction, preterm delivery, and fetal demise. This condition also carries a large risk of preeclampsia and health issues for me. After all this information was given to us, we were given the option and recommendation to terminate the pregnancy at 22 weeks gestation.

I couldn’t believe what I was hearing, to me my baby was fine, I could feel her inside my belly, how could there be something wrong? From that day forward I decided to advocate for my baby.”

The midwives were shocked

Pregnant Grace

Grace was now having weekly doctor’s appointments and two blood tests per week. Each week her baby was still growing. Grace and Shahil were told to expect an early delivery and to prepare for the worst-case scenario. At 25 weeks, Grace was admitted to the hospital now with preeclampsia.

For Grace and Shahil this pregnancy was getting harder and harder.“I was lucky enough to be sent home a week later with a large dose of ‘Labetalol’ and 3 x daily blood pressure checks to ensure I was closely monitored by my OBGYN. By this stage, my husband and I were expecting the baby to come at any time due to the severity of the high-risk pregnancy, so each day she stayed inside was a blessing and a miracle”.

28 weeks came and Grace was facing the usual test to check for Gestation Diabetes. Her results? Positive for GD. Grace was devastated, what else could go wrong? Midwives were shocked that Grace had made it to the third trimester.

We didn’t know what to expect

Now at 36 weeks of gestation, they truly had defied the odds. Grace’s blood pressure was now dangerously high, even with medication so a c-section was scheduled for 37 weeks.

“We didn’t know what to expect during the surgery. All we could think to ourselves was ‘Is she going to be ok?’. My OBGYN performed the C-section. The room was filled with midwives and NICU staff. It was terrifying, but I felt somewhat calm knowing I was about to meet her.

Grace meeting her baby for the first time

Once she was out, they rushed her over to the amazing team of NICU staff who were informed about our case. All I could hear was muffled crying, then silence. I was so scared. Once bub was out, they removed my placenta which physically fell apart due to how bad of a condition it was in”.

Their baby was taken to the NICU (Neonatal Intensive Care Unit) where she was placed on a CPAP (continuous positive airway pressure) machine to help with her breathing. Grace was taken to recovery however her blood pressure continued to spike, and she was at risk of seizures. She was administered 24 hours of magnesium while her husband, Shahil, stayed with their new baby in the NICU.

Grace, baby and husband

Isla-Grace was born on the 19th of Aug 2022, weighing 2.4 kg. She was estimated to only be 1.8kgs the previous scan the day before her birth day. To this day, the doctors and midwives still refer to her as a miracle baby. I am so happy I advocated for her and followed my intuition.

She is now 7 months old, meeting all her milestones and has no medical concerns. As for myself, I stopped all blood pressure medication at three months post-partum and was cleared of diabetes at my postpartum test.

Graces healthy baby at 7 months old.

If you take anything away from my story, it’s to advocate for yourself and your baby! We are so blessed to have such a happy, healthy little girl after such a traumatic and unpredictable pregnancy”.

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