At 32 weeks pregnant, Kelsey and her husband Scott arrived at their local hospital in Minnesota, prepared to deliver their baby boy.
Their son was deemed ‘terminal’ due to a heart defect and chromosomal abnormality, discovered in an earlier ultrasound.
The heartbroken couple refused to give up and, although they knew it would be hard, they were ready to meet him and let him go.
Kelsey didn’t deliver her son that day.
Instead, she watched her seemingly healthy husband get incredibly sick and be admitted to the ICU. In four short days, Scott lost his battle with an unknown autoimmune disorder and Kelsey was left pregnant and a widow, as she prepared to deliver her terminal son by herself.
Just four days after her husband’s unexpected death, Kelsey gave birth to their son, Maxley.
‘I’m sorry he is terminal’
Rewind to 2016 when Kelsey and Scott were married. They had been together since college and, straight after their wedding, decided to try for a family.
After a year of no success, the couple turned to fertility specialists. Kelsey was able to fall pregnant straight away after that but miscarried. A few months later, she was expecting again – a little boy.
However, at her 20-week ultrasound, the doctors noticed something was off.
After 2 additional ultrasounds they informed us that baby boy had a heart defect. He had an AV canal defect and likely a chromosomal abnormality,” Kelsey first shared with Love What Matters.
The doctor came into the room and said, “I’m sorry, he is terminal and will not survive.”
Scott and I said we would not give up, and we would keep fighting for this baby until his last breath.”
In the midst of the heartbreaking news that she would have to say goodbye to her son shortly after birth, the family was also in the process of moving house. Scott had just started a new job and, with everything going on, he started to feel very unwell
We attributed it to the stress of everything that was changing in our life. Maybe it was allergies, arthritis, a cold. We were in and out of the doctors, urgent care and specialists, trying to find an answer to his never-ending pain.”
Scott continued to have horrible body aches, coughing, fever, and joint pain but no doctor could pinpoint what it was.
Then, on June 4th, just two months after discovering her son’s terminal heart defect, Kelsey was admitted to hospital for a scheduled induction.
Bub wasn’t growing anymore. It was time.
Coughing up blood
Scott and Kelsey went to the hospital together to get Kelsey settled. Scott then went to work but returned to the hospital to check. The induction wasn’t going ahead that day so he went home.
I thought Scott looked pale and didn’t look good. I told him to go home and get some rest, I would be just fine. We talked on the phone that night and I told him I was going to sleep.”
The next morning Kelsey woke up to several text messages from Scott. He was coughing up blood. He had called an ambulance. He was on his way to the ICU in the same hospital she was at.
Kelsey immediately rushed to the ICU to find him and he started to look a little better.
His joints weren’t aching anymore, he was able to move his fingers without pain and enjoyed standing up and sitting without being in excruciating pain anymore. Tuesday afternoon they moved him from the ICU into a regular room.”
For the next two days, Scott continued to struggle to get his oxygen levels up while Kelsey remained by his side, her induction still looming.
She assumed that Scott would get discharged in a day or two and then they would deliver her son.
However, the next day Scott took another turn and returned to the ICU. The doctors explained how they would need to put a central line into his neck and do a procedure similar to dialysis where they would take out his blood, clean it, and put it back.
“I kissed him, told him I loved him and that everything would be OK. That was the last time I saw his eyes.”
Kelsey returned to her room only to be called back shortly after with more bad news. Scott’s lungs were giving up and he went into cardiac arrest.
The doctors attempted CPR to stablise him but they were concerned about the level of oxygen. He had multiple blood transfusions but they couldn’t stop the bleeding in his lungs.
There was nothing more they could do.
Looking back, I think the other doctors were really sugar coating his condition and how bad it was. I really didn’t know how sick he was. Nobody told me he could die. Nobody said his body was shutting down.”
Kelsey was able to sit with her husband to say goodbye. To hold his hand and to tell him how much she loved him, how much their son loved him.
He looked terrible. It wasn’t my husband. It couldn’t have been. My husband was 6’6” and larger than life. He was the strongest man I knew and could get through anything. He always had a smile on his face and loved everyone. But here he was, unconscious with tubes and wires everywhere. Gone. It was excruciating. It felt like a bad dream that I would wake up from. Even now, it feels like it couldn’t have been real. It was by far the hardest thing I have ever had to do.”
Scott passed away on Friday, just after midnight. He was diagnosed with Wegener’s Vasculitis or granulomatosis with polyangiitis, which is a horrible autoimmune disease that impacts the ears, nose, throat, lungs and kidneys. It is treatable if it is diagnosed early enough.
Unfortunately, for Scott, it was diagnosed too late.
I am not even sure if I cried or slept or ate or went to the bathroom. The next 2 days were a complete blur.
I was in and out of sleep and I would wake up to voices in my room. I recognized them as friends and family, but don’t remember looking at anyone or speaking at all.”
On Sunday, the family organised a viewing for family and friends to say goodbye to Scott.
On Monday, Kelsey was induced. By Tuesday morning, bub’s heart rate was dipping with her contractions so they went for a c-section.
At 11:56 a.m. on Tuesday, June 12, 2018, four days after losing his daddy, Maxley Russell Ferguson was born.
Kelsey was expecting to have to say goodbye to her son that day. Just four days after she said goodbye to her husband, two days after his viewing.
But she didn’t.
Maxley was small, mighty, and breathing on his own. Yes, he does have a heart defect and a chromosomal abnormality, neither of which are terminal. Very rare, but not terminal.
I didn’t know leading up to delivery if he would survive, and I was prepared to lose him too.”
But Maxley continued to fight. For 99 days in the NICU and ever since.
In January 2019, Maxley went in for open-heart surgery. Three days after the surgery, he started to go downhill.
He started needing more and more breathing help. His oxygen levels were dropping, they didn’t know why, and after a few weeks, he ended up on life support. It was my last chance to save him. He wouldn’t have lived through the day had I not put him on it. That was the hardest decision of my life.
To put my son on the same machine that my husband died trying to go on. In the end, it saved Maxley’s life.”
Maxley remained on life support for 25 days and, at ten months old, he returned home.
He had to regain all of his motor skills, had no muscle or bone strength and had no voice after having a breathing tube for 12 weeks.
But he is home. And he is happy and healthy.
In fact, he’s now an energetic bubbly four-year-old who adores his mummy and his dog, Mountie.
Kelsey shares updates on Maxley’s health and many adventures as the three of them (Maxley, Mountie and mumma Kelsey) tackle every day with smiles and gratitude.
[Maxley] has been mostly non verbal but is starting to talk! He has about 20 words but tries to say just about everything. He knows over 100 signs so we speak sign language at home too.It has been a crazy road with 10 surgeries down with at least 2 more to go but we are surviving one day at a time.”
You can follow their journey through Honeyed Heart.