Choosing a paediatrician
We knew we had found the right paediatrician to be at the birth when on discussing the framework for Sarah Hope’s birth and care plans, we realised that he would be as active in providing care and comfort for our daughter if she was dying as if she was surviving. This felt quite different to the “hands off approach” approach that we had come across, and it felt like it honoured how we’d want our daughter to be treated.
Home and hospice plans
If Sarah Hope was going to survive for a longer period, we knew that she would not come out of hospital for a little while so we would be able to make plans to get ourselves sorted out at home etc. We deliberately underprepared for this option, but my sister was on standby and had a list and knew where she could borrow items in order to set us up at home if this was necessary.
The more challenging possibility was that if Sarah Hope survived but would still need 24 hour nursing care. We probably wouldn’t want her to live in hospital indefinitely as our whole aim was to emphasise quality of life. I had begun researching palliative care, whose motto is to “add life to time rather than time to life”, and totally identified with this approach. We live next door to Nazereth House, which has a hospice geared up for neonates, so I decided to call them up as I was keen to learn more about palliative care. I wasn’t really even sure what I was asking when I called, but the sister in charge of the hospice said “Leigh, I’ll call you in an hour with an answer”. She called back and asked me to come to a meeting with management. She didn’t want me to be intimidated but this meant meeting with Mother Superior, another nun who is a social worker, the head of the Children’s home and her (the head of hospice). She also didn’t want to get my hopes up as she said the initial response was “we’re not covered for this”, but they had never before received a call from someone who was yet to give birth (most of the children in their hospice were abandoned) so they were interested and open to hearing my story.
The meeting with the management at Nazereth House was remarkable. I shared our story, explaining that we had faced real opposition by choosing to continue the pregnancy, and although Sarah Hope had the complication of hydrops which was expected to be fatal, she also had a chance of being born alive. Mother Superior said to me “when we’ve considered how much opposition you must have faced to get this far in your pregnancy, it’s clear that God must be with you. I have such a sense that God is going to do something amazing through all of this”.
The sister who is a social worker explained to me that children have to be placed at Nazereth House in terms of the Children’s Act. This is a legal process, but should not be interpreted negatively because it is so. Because of a recent case of theirs, whereby the baby required a level of nursing care that the parents would not be able to provide at home, they thought that Sarah Hope could possibly be cared for at Nazereth House on the same basis. They prepared all the paperwork in the eventuality that this would be the case so that if we needed them they would be ready to help. I was taken on a tour of the grounds and the hospice, saw exactly where Sarah Hope would stay if she were placed there, and was amazed at how everyone I met was so warm and had already heard about Sarah Hope. I was so humbled by the meeting. Not only their willingness to help and go totally out of their way to have the option of being able to do so, but also their attitude to the lives of those in their care. They spoke of each child with such delight and love – they were extraordinary women. It was also very special for me, because knowing that I had their support meant that even if Sarah Hope survived but not in a good enough condition to come home, that I had somewhere close by to take her. This made going into the birth a lot easier, and I so appreciated how the Lord made provision for this concern of mine.
Planning with the gynae
My gynae was shocked when I told her I had been counselled that Sarah Hope had an outside chance of survival. I realised that the whole time she must have been going on the conclusion of the reports by the first sonographers who said that the condition was lethal in bold print (without a diagnosis, however). The latest news totally changed matters for her - if there was a chance of survival, then you wouldn’t want to make the situation worse by applying limited monitoring to the birth which could result in cerebral palsy, for example, in addition to what we were already having to deal with.
I told the gynae that we’d decided to elect for a c-section, which she was delighted about! I was so impressed that she never even mentioned a c-section to me before. She had actually encouraged natural birth on the basis that she understood from the first sonographer’s report that our baby was not going to survive. And given that one’s first pregnancy is the index pregnancy setting the bar for future pregnancies, a natural birth would be better for my “obstetric career”. I thought this was a hilarious concept but I understood what she meant. After my appointment, I went down to the labour ward to get a feel for how everything worked and cried all over an unsuspecting mid-wife there as I tried to explain our situation! The ward seemed really accommodating, and I felt comfortable that they would try and give us our own private space however they could.
At 36 weeks, I went to the gynae for a check up. We had a chat initially getting all the arrangements for the birth out of the way. My sister for some reason was keen to come to the appointment with me so she was there as well. We then went to check the baby out. Where things had been stable for months (including a detailed scan 2 weeks before), there was now a significant drop in the amount of fluid. The gynae did a Doppler and the blood flow to the placenta was bordering on abnormal. We needed to get the baby out! It was a Wednesday, so I asked if we could do it on Monday – after the weekend, so we could at least gather ourselves? But the gynae said leaving it that long meant risking her not coming out alive. We made plans for a c-section on Friday afternoon. We had two days to go – Sarah Hope was coming whether we were ready or not!
Memory making
In terms of memory making, we aimed to go into hospital with a plan for what we’d like to do with Sarah Hope if she lived for 3 hours, 1 or 3 days. In those circumstances our time would be limited and we’d want to use it really well. While these plans were flexible (so as to not set us up for additional disappointment if we couldn’t carry some of them out), we wanted to be intentional about the time we had with her, be present and make memories. If we had longer than that, we didn’t need to worry as much, but it was still good to have some things in mind to do. My sister organised some sweet little outfits for her and books that we wanted to read to her. She also bought the basic goodies like a few nappies and cotton wool etc so I never bought anything for Sarah Hope before she was born. And of course, we had the beautiful receiving blanket with Sarah Hope’s name embroided on it, which my mother had made months before.
Letter to the nurses at the hospital
Birth of our daughter, Sarah Hope Berg
Thank you for being a part of this significant time in our family’s life.
The complication of hydrops fetalis was recognised early on in the pregnancy. The cause for this, and other anomalies, has not yet been diagnosed, but we understand that the prognosis for survival is likely to be poor.
We celebrate our daughter’s life, but we are also not afraid of death, recognising that it is God who gives and takes away. As a result we would emphasise quality over quantity of life for Sarah Hope. We would rather that she has a "good death", than prolong or cause unnecessary suffering. We want to protect her dignity, and offer her as much comfort as possible.
We don’t want her life to be artificially prolonged by aggressive intervention. We do realise, however, that she could survive without resuscitation. While we don’t want to prolong suffering, we also don’t want to worsen disability. We want to prepare for both the medical decisions that need to be made as well as for a precious time of meeting, holding and possibly saying farewell.
We would so appreciate your helping us to enjoy our time with our daughter, in the greatest privacy that is possible in this setting. We would like her to be with us (in a private room) and to have as much skin-on-skin time as possible. We are likely to arrange a photographer to help us capture some memories.
Should Sarah Hope pass away, we’d like to have an opportunity to bath her and dress her, have as much time as we need with her to say farewell (and possibly invite some family and friends to do the same). We’d like to arrange the following keepsakes:
- her blanket, clothes/booties/cap
- lock of hair, if relevant
- hospital bracelet and any other hospital cards / related items
- footprints and handprints
Thank you for your help.
Regards
Richard and Leigh Berg
Last email sent out to family and friends
Dear family and friends
We want to thank you for being so gracious and supportive over the last few months. Sarah Hope has held on beyond all doctor's expectations and will be born this month - we're really looking forward to meeting her. She is due on 24 December, though she may well come earlier!
We do not know what will happen once Sarah Hope is born given the complications experienced in the pregnancy but we do know that she is a precious gift to us.
While we acknowledge that the road ahead does look extremely challenging we are fully confident in the goodness of God and the strength of family and community. Believing in God's promise of eternal life we need not fear death, but rather choose to celebrate the life of our beautiful daughter, who has already brought us much joy and many special memories.
Once she's born, we'll update you as soon as possible. We so appreciate every one of your messages, though we may not be in a position to respond. Leigh's sister, Carol Whyte, can be contacted should you wish to find out what is happening or if there is any way in that you can help.
Much love and grace to you all,
Rich and Leigh”
The night and morning before
My family came around with some dinner and to wish us well for the birth. My sister arrived with all the goodies we needed for the hospital , and my mother brought a gift she had made – a treasure box for all the memories we wanted to capture of Sarah Hope’s birth with her name beautifully embroided on the top. We were so touched and delighted. We knew that we really wanted to be present at the birth so made plans to communicate with my sister only, who would then be available for others to contact. That would be the arrangement for as long as we needed it to be.
We stayed up most of the night organising ourselves and clearing our calendars for the next while so we wouldn’t have to concern ourselves with anything outside of Sarah Hope. I had hoped that Rich and I would have had some time together the morning of the birth but it didn’t really happen. I hoped that we might summons the energy to pray on the way to the hospital but we actually had no words to pray. We knew that others were praying for us, however, and that God had prepared us for the moment. We had wrestled for months – now was a time to rest in Him and get ready to meet our daughter.
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