Baby Jean Gotch is extraordinary in every sense.
Diagnosed in utero with severe congenital heart defects, it was predicted that baby Jean would die within a few hours to a few weeks after her birth.
Defying all medical expectations, Jean is now six-months old and has brought love and joy to her family – parents Tanya and Michael, and proud older brothers Brinn, Endo and Alby – their extended family and the wider community that has rallied around them.
After three very fast births with their eldest boys, Tanya and Michael planned their fourth birth at home, in Healesville, with the assistance of Yarra Valley Midwives.
“We had the conversation that they probably wouldn’t make it to the birth, but we would like them to be there for the third stage of labour. They are beautiful, lovely. They have been amazing,” Tanya said.
“We had the 12 week scan and everything seemed normal at that stage. We found out she was a girl then – we were not concerned with having a boy or girl but finding out meant we connected with her differently, we knew she was Jean and we were all so excited to meet her.
“Then, at 20 weeks, they picked up that she had a congenital heart condition. They were fantastic, the (sonographer), we have had the same person for all four children. He knew our background, and he organised very quickly for us to see a cardiologist to talk about what was happening inside her.
“It is all very complicated; she has massive holes through her heart. Her stomach, her liver, all her organs are in different positions.
“Basically she is relying on a ductus that bypasses the heart, and I’m not medically minded so I can’t explain it very well, but that’s how she is surviving. That ductus usually closes off in babies when they are born, within hours to weeks after birth. We were expecting that once that closed off, she wouldn’t be with us anymore.”
Knowing that their time together may be short, Tanya, Michael and their boys made every effort to connect with Jean during the pregnancy.
“Alby kept saying ‘I want her for a long time’ and kept talking about all the things he wanted to do with Jean. Brinn was praying for a miracle and Endo had a quiet way of dealing with it; he was very philosophical about it, and said that Jean was everywhere and she would still be with us after her death.”
It was expected Jean would come early, so Michael took time off work from the end of December, and the family spent the summer holidays waiting for Jean.
In preparation, Tanya walked in the forest each day, going towards Mt Riddell.
“We had a lot of family time,” she said.
“Michael does woodwork so he spent January with the boys making her little coffin.
“Robyn and Lisa were so supportive, and helped us understand. Michael is a Palliative Care Nurse so he has the background, and he understands the heart.
“I was in a constant battle of wanting to do everything to keep Jean alive and not wanting to operate…Michael knew what she needed. Robyn and Lisa were so supportive to palliate as well and really helped me psychologically manage coming to terms with this. At one stage, Lisa ‘prescribed’ going to the forest.
“They don’t do heart transplants until (children) are at least five years old. Her insides are so complicated, and giving open heart surgery to a newborn… it was unlikely to be successful with Jean.”
On the 24th January, at 39 weeks, Tanya rolled out her yoga mat for her regular morning routine and knew that she would be giving birth that day.
“I said to Michael, today’s the day. The Midwives came after about an hour. They were fantastic, Lisa was away at the time, she was five hours away and she drove back because she wanted to meet Jean. Heartfelt Photography were there as well. The boys were playing in the backyard, they would come in to see what was going and then go back out to play cricket with my parents.
“We had Gurrumul music playing; he seems to understand life and death, and that’s what we were preparing for at the same time; life and death. There is something in his music that is so profound.
Tanya describes Michael as an incredible birth partner; over four births, they have perfected their techniques and work as a team, with Tanya meditating and Michael intuitively anticipating her needs.
Jean was born at a healthy 3.2 kilograms.
“We had no expectations; we were just allowing her to be how she is.
“We were told we would have a few hours, to a few weeks, and a few weeks would have been a long time to have had her. We baptised her soon after birth and invited all the people that had cared for us and for Jean during the pregnancy to come to bless her. We had about 50 people come in that first day or two.”
A Wurundjeri elder came to give Jean a traditional blessing with ochre and gifted a possum skin to Jean.
At 10 days old, the ductus that was keeping Jean alive was starting to close over.
“We were told that she would probably die in her sleep; just go to sleep and not wake up. But she was not just going to go in her sleep, she was on a mission to survive. She would stop breathing and then just take this massive breath. She somehow kept that ductus open 5-10 per cent.”
There have been several times since where the family expected to be spending their final hours with Jean, shutting in and cuddling her and saying their goodbyes, but she continues to defy the odds.
“The first time Michael and I went in to our room and just spent that time with her, helping her on her pathway to heaven, being with her, holding her against our hearts and waiting. We had the boys with her as well for about two hours, singing songs, singing hymns to her. And she kept coming through.
“In two or three months she had the same thing, it was closing off again and we thought she’s not going to make it through this. So again, we took her down to the creek and both had cuddles with her, and she pulled through again.”
Tanya said the community had embraced Jean.
“The community has been extraordinary in their support. A friend brought over a freezer to go on our back porch, and from November, people have been bringing over meals so we always have meals in our freezer,” Tanya said.
“We’ve taken her to the beach, had a stay in the city, and done daily normal things when she is well. And when she is not, when she’s really struggling, we shut down for the day and people have been incredible with it. We have had someone taking the boys to school, someone else picking them up from school; we have had someone take Alby for the day, people coming to prepare food for us, other people bringing food over.
“Our families, St Brigid’s Primary, St Brigid’s Parish, Little Yarra Steiner School have been really supportive.
“There is an extraordinary connection of prayer. People in our community but also people’s parents, friends, friends of parents…. We have had cards, gifts in the mail from people so far away. So many people that I didn’t know prayed have said she is in our prayers every day.
“When she has been in a really difficult place I send out a text message to say Jean is struggling, say a little prayer for her. Within an hour, I have had 54 replies, saying we are praying, sending our love. We feel like we just have this warm embrace around us when things are hard, that we are not alone. I know I could call on anyone at the drop of a hat.”
“Our GP has been extraordinary, he’s done home visits from Selby and he’s travelled nearly an hour to see Jean. Rowena (from Eluvi) has given Shiatsu to Jean and myself, she has a beautiful energy. Tim, the naturopath has helped as well; Monash Paediatric Palliative Care, family support workers at Very Special Kids, and Yarra Valley Midwives have maintained regular contact with us. All these external supports have been helpful.”
Tanya said the family had not ruled out exploring further options – when Jean is bigger- but at this stage, they were taking each day as it came, and enjoying their time with Jean.
“Brinn tells her how beautiful she is; he has always wanted a sister. Endo has silent conversations with her – now Jean is ‘chatting’ he will listen intently. Alby is always keen to give Jean a cuddle and she laughed for the first time at Alby jumping.
“Jean has been smiling since she was six weeks old. I could go on for hours about how special Jean is to them and they are to Jean.
“She’s got her journey and we are trying to let her live her life rather than preserving it.
“She is very alert and has such engaging eyes; she’s always looking through to your soul.”