Choices regarding the birth and care plan for Sarah Hope

The day after the 28 week scan, I spoke with the geneticist who said that based on the report we were now looking at an outside chance of survival, for a shorter or longer period of time. She explained that the decisions around what level of care to provide at birth were not entirely black and white as if one decides to opt for supportive care, it needs to be provided in such a way that it does not worsen disability should the child survive (for example, not providing enough oxygen at birth which could result in brain damage). I realised I needed to find out a lot more about intervention versus supportive care, and based on the advice of a doctor friend made plans to chat to a number of paediatricians to learn about how they would handle this type of situation. Right from the 13 week scan, I was quite interested in the ethics of these types of decisions, but now was the right time to look into it.

The questions we were wrestling through were:

1.       What type of birth to go for? When a diagnosis is “incompatible with life”, some choose to follow a natural birth even though this would be more stressful for the baby because their baby is not going to live for long and this would be better for future deliveries. Others choose to go for a c-section so that they can get as much time with their baby alive as possible. We understood the arguments for both sides and totally respect that this is a personal choice of the families involved. In our case, we didn’t have the “security” of a diagnosis that was definitely incompatible with life. While the complication of hydrops was expected to be fatal, it seemed to be improving, and there was no clarity on the underlying cause of the hydrops.

2.       What type of after birth care to go for: supportive or comfort care measures versus more aggressive intervention. We certainly didn’t want to abandon Sarah-Hope by not supporting her adequately. But we were also concerned about the other extreme where you intervene more aggressively, giving your child all the mechanical life support available and “create viability” thereby preventing a child from a good death, as they now have enough function to live.

There were two extremes. The “less intervention route” was to go the natural birth route and not monitor the baby during the birthing process. The “more intervention route” would be opting for a c-section and applying whatever medical technology was available to support the life of the baby.

We found that consulting with various doctors meant processing their attitudes towards life, death and disability. Doctors may be trained in science, but their opinions are influenced significantly by their own worldview. But after working through all of their opinions, it became clear what ours was. It was also interesting to appreciate the privilege of private medical cover and being able to consult various doctors who generously gave us time to talk things through free of charge! I wondered how I would have coped if I was in a health system where these choices were made for me, where due to “resource constraints” interventions may have been withheld because the baby had a poor prognosis. While it may have taken the burden of making the decision away, the results could have been more difficult to deal with. We really had to come to terms with the fact that as parents we were going to make decisions which would have an impact on our child’s life. And we wouldn’t necessarily ever know what that impact was, whether it was the right or wrong decision. Intervening didn’t guarantee that she would live. Withholding support didn’t guarantee that she would die.

At 29 weeks, we decided that should the baby come before 34 weeks, we would go the unmonitored natural birth route with supportive measures after birth, given that the prematurity would add further complications. So we had a few more weeks to get our plan together should the pregnancy continue past 34 weeks.

Based on the scan reports, a couple of the paediatricians said that if we didn’t intervene she would probably die in the delivery room. The combination of hydrops and hyperplastic lungs, plus the cystic hygromas meant that it was likely she would find it difficult to breathe. Some said that if we were considering intervention we may need to consider more drastic measures such as using nitrous oxide etc. Others said they “wouldn’t make drastic interventions for a handicapped child”. This made me so angry. Would I choose a birth and care plan based on the fact that my child did not have arms? Was it fair to discriminate on that basis? This proved to be the crux of the matter for us – would we make the same decisions for this baby as we would for one that appeared to be healthy?

As I talked through these issues, a couple of friends reminded me that this was not an intellectual test that we needed to pass but a matter of faith and trust in God. This was really important for me – obviously the life and death implications of the decisions were weighty, but it was important to not fear getting it wrong, and believe that God is ultimately in control. I needed to exercise trust in Him in this regardless of where we got to in our response / decision making, whether we made the right call or not, and believe in His goodness regardless of the outcome.

After a discussion with a couple who ran the parenting course at our church, we decided that we should provide the same level of support as we would for a healthy child – we would consider a c-section for a healthy child, so it was therefore on the table for this baby too. We would want a healthy baby to have the standard supportive measures after birth such as suction, a bit of oxygen etc, therefore these should be provided for Sarah Hope. When discussing this with our church elders, we decided that we would do our part to “bring her into the world” by c-section so she would have the least stressful arrival possible, and then see where God took it from there. What happened after birth could only really be determined at the time.

We were counselled to put down on paper a framework for making decision at Sarah-Hope’s birth. Too often people make very specific birth and care plans (even for typical births) which can’t be adhered to at the time  – so we thought this was a great idea as it would give flexibility to respond to the situation which emerged without creating additional disappointment, yet communicate what we really valued and hoped for.

We jotted down the following points and discussed these with our church elders before taking it to our doctors:

1.       Sarah Hope been given to us as a gift, we want to steward her life and be the best parents to her, regardless of her condition, prognosis and length of life.

2.       We are both for life and not afraid of death, recognising that it is God who gives and takes away and believing in eternal life.

3.       In recognition of the ‘medical facts determined by the scans of sonographers’ regarding the complication of hydrops, without known cause, as well as other anomalies, we understand that the prognosis for survival is poor and the potential for further complications high. As a result we would emphasise quality over quantity of life.  We would rather have a "good death" than prolong or cause unnecessary suffering.

4.       As her parents, we want to protect her in terms of her dignity and prevent her:

·         From being disregarded and abandoned because of her prognosis, appearance or disabilities

·         From being treated as an object of medical technology/heroics

5.       We want Sarah Hope to know God's love for her through us, that she is precious and valuable, to know as much comfort and care and experience as little suffering as possible

6.       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.

7.        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.

8.       Running through different scenarios, we’d appreciate understanding the decisions that might need to be made as well as clarification on a number of terms (resuscitation, “letting nature take its course” in a hospital context, supportive measures, comfort care, palliative care etc).

Having the courage to face up to some very difficult questions and emotions

For the next two months we were very busy with work, working evenings and weekends and didn’t have much time to process. Underneath it all, I was emotionally distressed. I was searching for answers because the whole pregnancy we thought that the next scan would give us more information… and yet although the picture was changing, the doctors could not really tell me anything. Based on their opinions we shouldn’t have been at this stage in the pregnancy. I didn’t hold it against them as it was an unusual situation, but I realised I couldn’t look to them. We really had to throw ourselves on the mercy of God, who knows everything… even if all the specialists we were consulting didn’t.

When we first met our pastoral counsellor, we admitted to her that our “worst case scenario” was the baby making it to term, as having a significantly disabled child was extremely daunting. Looking at it from that place, we didn’t know how we would cope and we certainly didn’t know what that would then mean for future family – would we have the emotional or financial resources to provide for Sarah Hope let alone have any more children? Having passed the 28 week scan, with our baby’s heart beating away into the viable pregnancy stage, we were indeed suddenly having to face up to this possibility. In a very honest session with the pastoral counsellor, we discussed the questions I was grappling with:

-          How did I really feel about my daughter living or dying and why?

-          What would be the impact on my life if she lived or died?

-          How did this influence me in making decisions about how much medical intervention we wanted during and after the birth?

At the 13 week scan, we faced so many potential outcomes. Of these, miscarriage, maternal health complications, stillbirth hadn’t arisen as they had been expected to … and the possibility of live birth, infant mortality or a surviving but disabled child were ahead of us. We had consciously worked at not fearing outcomes… and this also meant not hoping for a particular outcome. Fortunately, they all seemed like pretty awful outcomes so it was hard to hope for any of them! It was possible to consider which outcome would be harder and want to avoid it – but it was impossible to know that. What does one hope or pray for in such a situation? The scripture Romans 5:2b - 5 was really key for us - to put our hope in the glory of God. We wanted an outcome that would bring God glory and we were determined to walk this out as best we could for that purpose. But even though we were guarded about hoping for particular outcomes, as the weeks went by, we did have actual desires which we prayed for. The first prayer request was that we really didn’t want to have another miscarriage. As our daughter pulled through unexpectedly into the viable pregnancy stage, we then realised we could be looking at birth with her dead or alive. We wanted our daughter to be free, which we knew would only be in heaven, but we also wanted to meet her and have the opportunity to love her in person. We were enjoying her growing inside of me so much, we didn’t want to lose her and the richness she had brought to our life. We wanted more time. We wanted her to be born alive so that we could have some time with her. We wanted to hold her.  We also prayed boldly for healing at times.

The increasing boldness and passion that we had for Sarah-Hope’s life didn’t make her birth, which was drawing near, less daunting. She seemed safe inside me. As soon as she came out, we knew that she would be subjected to prejudice because of her swollen and disabled body and this broke our hearts. Even though we knew that Christ himself was despised, not esteemed, had no beauty  or majesty to attract us to him (Is 53), concern about her appearance was real. More than anything, however, I was concerned about what my emotional reaction would be to Sarah-Hope’s birth and survival. Though no doctors would really talk to me about her living, I knew I had to prepare myself for this outside possibility. I would often say to Richard, “do you realised we could have a disabled child?” One night he amazed me by saying, “Leigh, it would be incredibly difficult. But I would rather have that and fall into the hands of God than abandon her.” I was stunned and humbled by this beautiful response. Richard’s trust in the grace we would find by “falling into the hands of God” deeply moved and encouraged me. Obviously, as Sarah-Hope’s mother, her living would impact my day-to-day life in a different way to Richard. But Rich helped me to lift my eyes to the Lord to be able to say “if He is with us, what can man do to us?” This, in fact, had already been our experience in the pregnancy. Though outsiders would look at our circumstances and consider them to be a “nightmare”, we had known real peace, a wonderful sense of God’s presence with us as He protected us on the journey. God had been with us; God would be with us. This gave us confidence.

The key to making the birth and care plan decisions was surrendering to the truth that our sovereign God in the heavens would do whatever pleased him (Psalm 115:3), and we had to accept what that was. That freed us up to give our daughter the opportunity to come into the world under the best circumstances, and then see whether God would give her life or take her to be with Him. And so we set out to make our plans in such a way that promoted her life chances but did not presume them – we did not know what the outcome would be, but we wanted the decision to be the Lord’s.

I found our sessions with the pastoral counsellor very helpful. As we were sorting through different opinions about our situation, she encouraged us that people would give advice from their perspective and it must be understood as that. God was calling Rich and I to walk this out and as Sarah Hope’s parents we had the most information about the situation which would be used to make our decisions. Again, we were reminded that parenting, like the rest of life I guess, includes making mistakes which may be far-reaching but thankfully we serve a God who saves us and won’t abandon us. We treasured the prayers that covered us during this period and all those who sent messages encouraging us with scripture and love.

The viable pregnancy that no one expected

At 26 weeks, the gynae was in totally different mode to our meeting 4 weeks before. Having crossed the 26-week mark, the pregnancy was now considered viable and issues such as birth plans and care plans were totally on the table for discussion. I had hardly sat down when she started firing away with questions about monitoring the baby during birth and whether we’d go for intervention or supportive care after birth. She suggested no monitoring and supportive care, and that natural labour could continue, possibly with draining fluid if necessary to get the baby out. I told the gynae that we had arranged to have another thorough scan with the sonographer at 28 weeks. And that depending on how things were looking, we would start to put our plans together. She performed an ultrasound scan – there seemed to be less fluid in the heart and lungs and the heart was beating strong, so we were all interested to see what the detailed 28 week scan would reveal.

The 28 week scan indicated that the heartbeat was strong and organs were in a pretty good shape. There was no improvement in limbs or worsening of swelling, and the placenta and amniotic fluid looked normal and stable. The sonographer explained that this meant that there was a greater chance of getting to full term. Because the risks we faced with fluid build-up could be either heart failure for the baby or maternal health complications, we were glad the swelling wasn’t getting worse. On a superficial level, we were quite relieved that it didn’t look like anything would happen soon as we both had so much work in the following two months! But on a more serious note, it was very challenging emotionally with the pregnancy reaching viability and what that could mean for us. That weekend we asked some friends to come over to pray for us and the baby. We shared honestly about where we were at, and so appreciated them taking the time out to lead us into a time in the presence of God.

Pregnancy Shoot

In organising the shoot, we explained our story to the photographers and they offered to do the shoot as a gift for us. We were so blown away by the generosity and kindness of these ‘strangers’, and even more so by the stunning shots they took. We were so proud – and told everyone about them! Check out lovemadevisible.co.za for more of their outstanding work.

Rich running the Table Mountain Challenge for his daughter

Rich at the half way mark

Those legs made it all the way around Table Mountain

Celebration at the end!

As Rich ran around Table Mountain that day, many runners asked him who Sarah Hope was. He explained to them that it was his daughter. During one of these conversations Rich felt led to share a bit more of the story. The runner was also a Christian and wanted to pray for Rich. We met him and his wife at the end of the race and that week they came to our home and prayed with and for us and Sarah Hope. We were so touched by their care and concern for a family they did not know. And they continued to be in touch with us after the birth as well.

After the race, we hosted a birthday dinner for Rich. It was such fun. Friends of ours who were at the dinner wrote a letter to Sarah Hope:

"Dear Sarah Hope

Last night was your dad's healthy (vegan) birthday party. Your mommy was absolutely glowing and she was so radiant. Her tummy had grown and she could now feel you move. Your dad had just completed the Table Mountain Challenge (a very long run up and down the mountain) just for you. His arms were covered in your name.
You were his motivator and you gave him the courage he needed. What speaks to me so clearly as I woke up the next morning is this: you, Sarah Hope, have been celebrated, loved and treasured for each day. Your fighting spirit, your determination and strength are remarkable.
Your parents have been on a serious journey with you, but through it all their unwavering faith, grace and supernatural joy has been a testimony to two incredible individuals and to their genuine love for Christ.
Sarah Hope, thank you for everything you are teaching us. We really do love you and your family immensely.

Much love
Aunty Katie and Uncle Pete"

Sharing the Sarah Hope story

We continued to tell more and more people about the pregnancy.

“We've named our daughter, Sarah Hope, and are really trying to enjoy the time that we have with her. We’re always in a bit of a state before a scan, wondering if the little heart is still going... but we're enjoying being parents, albeit to an unborn life, and have started trying to build memories and prepare for her birth in a way which will be hold no regrets and be helpful for any grief process we may need to go through. Her life, even if it is really short, has had a wonderful impact on us and we have much to be grateful for. We certainly believe that the situation could be reversed and that she could be healed through an extraordinary miracle (and it would need to be an extraordinary one!). At the same time we're not putting our hope in a particular outcome but rather putting our hope in God and that his grace will be sufficient, no matter what the path is that He chooses for us. We've had to work through the fear of Sarah Hope making it to full term, but being severely disabled and what that would mean for us. We’re learning what it is to fear God and not fear particular outcomes (miscarriage, maternal health complications, stilbirth, disability etc). We've been getting great support on a range of levels, which we're really grateful for.”

Sharing our experience was powerful in that people responded fully, telling us how they were, being very open to the challenges they themselves were currently facing. It was a beautiful time of sharing honestly and we treasured how we were able to connect with old friends, even if just over email, during this time.

We had another significant community moment when we shared our story with our church small group. I spoke about the medical details and how the pregnancy had progressed as well as what had been challenging in the journey. Rich spoke about our theological response to the situation. Our community wept with us regarding the challenges that lay ahead, but felt so privileged that we were sharing it with them and allowing it to be a community process. They commended us for the way in which we were walking things out and prayed beautifully as well. It was such a God-centered evening, it was not really even about us or the baby, but a stunning offering to God from all.

We also had a very special time of prayer with the elders of our church. They really took the time to listen to us, and prayed for us. We felt so covered by their love and humbled by how they had served us.

22 week scan – preparing for the end; creating memories

At 22 weeks, I went to my gynae for a check up. As for all these appointments, I went in armed with my latest list of questions. At this point, I was thinking about the fact that I needed to be ready to go into labour and given that this could happen anytime. I wanted to find out about labour, how the hospital works, whether you were given a chance to hold the baby once you’d given birth to it etc. From what I had read about mothers who had had late miscarriages and stillbirths, the opportunity to hold your baby and have time to say farewell seemed really important to the grief process.

My gynae looked at me as if I was mad! She said to me that the biggest concern she has is that I would not go into labour. That the baby would die and somehow we are going to need to get it out. It was a hard consultation with her and a rather abrupt reality check. She told me the baby is not going to look very nice and would I really want to see it? My sister came to the appointment with me, and asked the gynae how long you would stay in hospital for after delivery. She said you would need to be there for 6 hours after giving birth for observation, then you could go. That was that. She had a quick look at the baby and admitted she didn’t see it getting to viability.

That night I didn’t have time to chat to Rich about it as I walked with a friend after work and then I went out to lifegroup (church small group). I cried myself to sleep. I didn’t want to wake Rich up to talk things through with him as I knew he really needed his sleep and was dealing with a lot of pressure at work. But then I felt Sarah Hope move… it was so beautiful. She kept me company through the night, moving about inside me. I felt so loved by God for having her and greatly appreciated her presence.

Sometimes I wondered how many people I interacted with, be they medical professionals or friends and family, believed that deep down this was unwanted pregnancy that I did not have the courage to terminate. That was NOT the case! This was a life we had been blessed with, we WANTED her. We wanted to experience her life, we wanted her life to be afforded the opportunity to touch ours, we wanted to meet her, hold her, comfort her and enjoy her. Sarah-Hope was NOT a religious principle, a law we had to obey, a duty we needed to carry out regardless of how we felt about it… she was our daughter, who had been knit together in my womb, whom we loved.

I met up with the pastoral counsellor and told her all about the latest scans and what the sonographers and gynae had said. I explained what I was hoping for in terms of having the opportunity to meet my child, and create memories with her even if she wasn’t alive at the birth.  The pastoral counsellor had worked as a midwife years ago and graciously and helpfully explained to me the reality of giving birth to a baby who is no longer alive. She said that there is a chance (and she had some terrible images in her head that she didn’t want me to have) that there will not necessarily be a whole body that comes out at birth because of the disintegration that takes place after death and during delivery. She suggested that we prepare for birth and the grieving process in such a way that was not dependent on being able to hold or see the baby as these images may not be what we want to remember our child for. There would be grief related to seeing the baby and grief related to not seeing the child, and we needed to ask God for guidance as there were no clear cut answers. We were encouraged to journal, taking pictures of us during the pregnancy and collect those of her in the womb and in so doing make memories which did not rely on that moment after birth in case the circumstances were such that it would be best to not see the baby. She was very encouraging, however, about the fact that we are battling for the dignity of our child to the glory of God.

So I set about the task of creating memories in the pregnancy stage in case we were not able to do this after the birth. Often before a scan, never being sure whether Sarah-Hope’s heart would still be beating, we would do something special with her. Rich was hilarious in this. For instance, we’d walk up the mountain and he would put his hands on my tummy and talk to his daughter about the stunning city we live in, turning me around as if she could see the sights through my belly button!

We specifically asked for pictures and dvd’s of our future scans (we realised this had not even been offered to us because of the abnormalities!), we amused the sonographer as we asked to hear Sarah-Hope’s heart beat again and again so Rich could record it for his phone’s ring tone, Rich ran the Table Mountain Challenge for Sarah-Hope with her name written on his arms and legs, and we organised a pregnancy photo shoot. I also asked my mother if she would make a blanket especially for Sarah Hope’s birth – something that I could wrap her in once she was born. This is the blanket she made:

We were so enjoying her life inside me and being deliberate about celebrating and capturing it. At the same time, we were able to appreciate that we would need to make flexible plans regarding the birth and what we might do after this in terms of memory making. We did not need to have additional disappointments around her birth if things didn’t work out the way we imagined.