Parents: Heather and Trevor
Hometown: Mississauga, Ontario
August 17, 2002 – September 7, 2002
Jeremiah Edward’s Story
“Before I formed you in the womb I knew you,” declared the Lord “before you were born I set you apart.” Jeremiah 1:5
Heather and Trevor were excited that Kaitlyn was going to be a big sister. At a routine ultrasound, Heather noticed that the baby’s feet were clubbed. The baby’s legs were also short for dates, but since that was also the case with Kaitlyn, she was entirely unconcerned. That evening she received a phone call from her midwife saying they had also found choroid plexus cysts in the brain and calcifications in the digestive tract and that they needed to have a follow-up with a high-risk pregnancy program.
At the follow-up ultrasound, the doctor found clubfoot, choroid plexus cysts, clenched fists, strawberry-shaped skull, and that the baby was small for his age. At that point they told Heather and Trevor that they strongly suspected their baby had trisomy 13 or trisomy 18. They said that both conditions were “incompatible with life” and that most children don’t live more than four days, and 90% don’t make it to one year of life. They then offered them the option of an amniocentesis which they declined until they had time to think about it.
They went away to have time to take this all in. At that time they decided to name their baby, who they now knew was a boy! They named him Jeremiah Edward, after Keith Jeremy (Heather’s brother) and Trevor’s brother Edward. They also claimed the promise of Jeremiah 29:11 “‘I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, to give you hope and a future.'” They still hoped that the doctors were wrong about Jeremiah’s condition, but they began to come to terms with the range of possibilities, from clubfeet to trisomy 13 or 18. What they had learned about trisomy 13/18 was heartbreaking, especially when they realized that it could someday be their story. The potential mountains were daunting, and they still didn’t know just what we were dealing with.
After a fetal echocardiogram where they found a VSD (Ventricular Septal Defect), they started to accept that the doctors were right. To that point, Heather had really been trying to deny what was being found, or search for alternate explanations, but this started the process of solidification. In fact, they booked an amniocentesis appointment that day for the following Monday.
Soon after, Heather started to have contractions. Just 23 weeks and two days along, they were scared. They rushed to the hospital, where they kept Heather in overnight, and gave her a morphine shot to try to stop the contractions. After Trevor came in the next morning they met with the pediatrician. He said, “Everything else aside, this baby is too small to live.” He told them what prematurity meant in terms of the first few months, as well as long term. He asked them whether they could cope with a handicapped child, and he asked them how far they would want to intervene if the baby grew large enough to be “viable”. They said, “all the way, then we assess and make our decisions.”
Thankfully they didn’t need to deal with those issues yet – later that afternoon the contractions stopped. They had an ultrasound, which showed she had developed polyhydramnios (extra fluid in the uterus – the likely cause of the contractions) as well as the previously noted abnormalities. Although they now agreed with the suspected diagnosis, they cancelled the amniocentesis. They reasoned that they weren’t going to terminate the pregnancy, and the results weren’t going to change anything else they would do. Heather says, “We loved Jeremiah unconditionally and were determined to fight for him and with him, until he stopped fighting himself.”
Heather joined a Trisomy 13/18 listserv where she received support, hope, and encouragement as well as a realistic outlook on their future with Jeremiah. For a little while after that life continued in some semblance of normalcy: doctor appointments and looking after Kaitlyn. Heather was placed on bed rest and had another episode of premature labor, during which time she was given shots to mature Jeremiah’s lungs. They had been told they wouldn’t get to 32 weeks – when they did, the restrictions lifted a bit. Then they were told they wouldn’t make it to 35 weeks – when they did, most of the restrictions disappeared. They were also told they couldn’t possibly make it to 38 weeks and yet they did.
Meanwhile, at her 34-week visit Heather saw a different OB who asked once again if she wanted to have an amnio. He said if Jeremiah had T18 he wouldn’t want to do a c-section even if Jeremiah went into distress, as he felt would compromise Heather’s abilities to have more children. Heather reiterated their position that it didn’t matter about the T18, that Jeremiah deserved a fighting chance no matter what. As a result of that appointment they drafted a birth plan that included the following statement: “Believing that God has created our son, and believing that regardless of his physical and mental handicaps or his life expectancy, that he is valuable – as valuable as any other human being – we would request the same care for Heather and Jeremiah as would be given to any other baby during labor and delivery.”
By August 10th Heather was 39 weeks gestation and was seriously ready for the uncertainty (or at least the pregnancy) to be over. She was scheduled for an induction for 9:00 am August 16th. During the induction, Jeremiah’s heart rate began to plummet more frequently and for longer periods of time. They started moving positions to try to maintain the supply of oxygen to him. Sometime between midnight and 2:00 am they decided, with the OB resident on call, to “abort” and go to a c-section.
Jeremiah was born at 3:06 am. Heather remembers, “He was whisked past us to the resuscitation room, silent, and we held our breath hoping and praying he would take a breath – he did, and the sound of his cry was wonderful! His first APGAR was 2, but by five minutes he scored 9.”
Jeremiah was born 44 cm long and 2300 g (or 5.2 lbs). He was put on c-pap (a breathing aid that keeps the lungs partially inflated) and suctioned frequently. Around 5:30 am Heather was finally allowed to go in to the resuscitation room to see him. Soon after that he was moved to the NICU and Heather to her room. One hurdle was down – Jeremiah was alive – but they knew that he was struggling.
Around 9:00am Heather went down to the NICU. Trevor had gotten a bit of sleep then returned with Heather’s mom, his mom and Keith and Kaitlyn. Trevor took the family through to see Jeremiah two at a time, and then they sent them back home. Heather and Trevor spent much time with Jeremiah, singing, holding his hand, and stroking him.
That evening Heather got to try to nurse Jeremiah. Unfortunately all of his muscles were very tight, including his jaw muscles, so he couldn’t open his mouth enough to latch on. In the end they decided he would stay with an NG tube for feeding, but Heather is so thankful she got to feel his mouth at her breast.
Jeremiah began showing problems with his bloodwork, so he was on a jaundice light to lower his bilirubin levels, and was being monitored for his hemaglobin levels as well. He had his first apnea spell – his oxygen SATS plummeted along with his heart rate, but revived again with a bit of stimulation. It was the first time Heather had seen him dusky, and it was very frightening for her. He also needed an echocardiogram and genetic bloodwork done, along with an ultrasound of his other organs.
When they got both the FISH (quick genetic test) results and the echocardiogram results back, the doctor told them the grim news: a) Jeremiah did have T18; and b) Jeremiah not only had a thickened pulmonary valve and multiple VSD’s, but they had discovered that he also had a coarct and patent ductus arteriosis. These two conditions, when combined, allow a child to live, but when the PDA closed (which was likely to happen in hours, days or possibly weeks) Jeremiah would die because he wouldn’t have any outlet from his heart to the rest of his body. The doctor explained that although this could in theory be corrected with open heart surgery, the combination of other heart problems and his t18 meant his prognosis was very poor – she suggested months at the hospital on a ventilator with a minute chance of ever coming home.
Wanting to do everything possible for their son, they decided they wanted to do the surgery. Heather writes, “We went to see him again – I hurt so much at the thought of the pain he was going to go through that as we sat and stroked him and held him I felt we just couldn’t do it to him. Trevor and I talked a bit more and we decided we would take him off the machines.
“It was around 7:00 pm when we made the decision to take him off the monitors and drugs. The doctor and resident were elsewhere, so it couldn’t happen immediately. We assumed, though, with what we were told, that once off the machines we wouldn’t have very much time with him before he died – minutes or hours. I went back to my room to call our house and my parents, but got a call from the nurses’ station saying Trevor wanted me back in the NICU. I practically ran back, c-section and all! I was so worried … I was sure he had died. In fact, he had just had an apnea spell, but as soon as I took him to hold him his oxygen SATs came right back up. We then knew that our decision to take Jeremiah out of NICU was definitely right.”
The doctors supported their decision to take Jeremiah out of NICU and to not do the surgery. They didn’t want them to leave that night, though, because they said they didn’t know how to do an NG feed and they didn’t want Jeremiah to get hungry. This was the first they realized they might actually get some time with their son. After sleeping with Jeremiah between them in bed, they awoke to find he had made it through the night. They learned how to change NG tubes and how to feed Jeremiah through the tube. Finally they were able to leave the hospital with a beautiful, live boy, but also carrying a partially filled in death certificate.
Trevor’s dad had flown out from England that morning, so he got his cuddle and picture with Jeremiah. They put Jeremiah on a slightly raised bassinet mattress between them, set the alarm for his next feed and went to sleep. “Not knowing” had been the norm during the pregnancy, and as they started to adjust to the situation with Jeremiah after he was born they realized it was going to continue indefinitely. As such, they tried to live life as normal as possible while simultaneously trying to fill each moment with as many precious memories as they could.
Heather recalls, “Sometime that first week we had made arrangements to have Jeremiah dedicated on Sunday. We arrived at the church frightened of everyone being around us and nervous that Kaitlyn would get sick (from another child) and pass it on to Jeremiah, shortening our precious time with him. We were so relieved when that had been done – it was so important to us to stand up and dedicate ourselves to loving Jeremiah as his parents, in spite of and because of his difficulties, for as long as God would give us. We had also taken some family pictures outside before church, so we felt that if Jeremiah had to go we could feel we had done the things that were most important to us.”
During the week, Heather treasured her time with both of her children. They sat outside on the steps in the shade Heather holding Jeremiah and Kaitlyn using her chalk on the sidewalk. She writes, “The sun dappled the sidewalk through the leaves and the summer flowers bloomed all around. We spent a lot of time like that, actually. I don’t think it rained once the whole time Jeremiah was alive.”
Friday they went back to the doctor. Jeremiah had put on weight! He was 4lb, 14oz! They weighed Jeremiah completely naked, which he didn’t particularly like. He expressed his disapproval by squirting the nurse not once, not twice, but five times! He was very emphatic.
They spent the next days as normally as possible, visiting and having visitors, sharing Jeremiah with family and friends. Heather got to go for walks with the kids in the double stroller. It was very companionable and felt “right”. But it was getting very hard emotionally for Heather. The uncertainty that they had hoped would end within a few days continued and had become very draining. After a calm and peaceful day, one that Heather recalls as “the only completely ‘normal’ day I had while Jeremiah was alive,” Jeremiah’s respirations were starting to sound more labored. There were times where he would stop breathing for a few seconds. Heather remembers, “I walked Jeremiah and sat with him in my arms, just staring at him – my beautiful little boy! For a while his fingers unclenched enough to make the “I love you” sign against my chest, and twice he reached up and stroked my cheek.
“As the afternoon wore on, Jeremiah’s breathing became increasingly labored. I tried really hard not to get worried about it, but this was hard. We had dinner and then took the kids outside for a while. By then Jeremiah’s color had become quite dusky.
“By the time we put Kaitlyn to bed Jeremiah was whimpering with each breath. We gave him his 8:30pm feed along with some morphine and went to bed. He woke us up around 11:30 pm whimpering. We thought he was hungry, but when we checked his stomach he was still quite full, so we just gave him another dose of morphine. Then Trevor walked him a little bit and told him how much he loved him and told him that when it got too hard he should go home to Jesus. After Trevor put Jeremiah back down in our bed between us, I stroked his cheek and cuddled him and told him the same thing. Then we each took one of his hands in ours, told him we loved him, and went to sleep.
“I woke up suddenly. It was Saturday, September 7th, 1:22 am. It was silent. I rolled over and put my hand on Jeremiah’s chest. It was still. I tried to find a pulse. There was none. I woke Trevor and told him – our precious Jeremiah was gone. We both held him a little longer and cried great sobbing tears.”
They spent the rest of Saturday sorting out details. Sunday morning they went to church. Sunday afternoon was his memorial service. There were at least 200 people there. One family brought 21 long-stem red roses – one for each day of his life. Several people, including Heather’s dad and Trevor spoke. They showed a slide show of pictures set to music. It was a very special service.
They released Jeremiah’s ashes off a rock jutty at Jack Darling Park in Mississauga into Lake Ontario on Saturday October 19th. It had been a cloudy, windy day. Trevor prayed first, then Heather stood to release them into the water. As she did so the sun came out from behind a cloud, and the ashes glittered as they fell into the water. “God had given us our son on short-term loan, and to Him had he been returned.”
“Jeremiah suffered from a condition the doctors thought of as “incompatible with life”, but Jeremiah experienced life – full of love and family and warmth – for all of his short days. We are thankful to everyone who made this possible. We have no regrets.”
An Uncle’s Perspective…..Keith
About mid-pregnancy, we received the news about Jeremiah’s condition. Telling family and friends was “so odd, usually ‘having a baby’ is just about good news; in this case it was good news mixed with sadness and mourning. Not the kind of news to give out lightly, nor to everyone.”
Keith felt the best thing as a relative was to give the parents all the time and freedom they needed, while still supporting them. He said that faith directed all of them strongly; in deciding to continue with the pregnancy, in supporting the family during Jeremiah’s life, and in remembering, mourning, and recovering from Jeremiah’s death.
Special memories for Keith were holding Jeremiah in the hospital when they didn’t know if he’d ever make it home and seeing his parents care for him with love while he was at home. The memorial service filled with sadness and hope was also very meaningful for him.
Keith wrote, “hopefully by memorial time parents have come to terms and have made conscious decisions (confusing though they may be) about why they made the choices they made, and what their baby’s life meant I think sharing these decisions and the reasons is the most valuable way for a parent to celebrate their child, and for a family and community to understand, mourn, and celebrate the child with the family.”
Keith describes Jeremiah’s life as “a life loved” and is thankful for God’s sovereignty, love, compassion, provision, joy, and peace.