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.