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).
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