I have been a neonatologist for more than 30 years and medical director of a program of perinatal palliative care that I created here in New York, NY with the purpose to help families like Indi Gregory’s family. I wrote these observations on November 13, 2023, when Indi was still alive.
In the third chapter of The Religious Sense by Luigi Giussani, he discusses the “The impact of morality on the dynamic of knowing”. He proposes a method to get to “a true knowledge of an object”. In the chapter Giussani talks about “feeling” as an ever-present component as we face anything of interest in reality. As I am looking at the little Indi and her situation, how many feelings I detect!
I feel a lot of sadness for her diagnosis – she is affected by a progressive incurable disease, and I ask myself, why should a baby have this condition which is life-limiting, and not be able to be healthy and live for many years enjoying life?
I feel upset for the large burden of pain Indi has suffered in her brief life. In intensive care – and I know this so well! – babies undergo painful procedures all the time, such as frequent suctioning of their trachea, injections, and needle-sticks to get laboratory tests. They have catheters and tubes in many parts of their little bodies, they cannot be breast-fed or bottle fed, and have a family life, like any other baby. Life in intensive care is a life of suffering but the burden of pain can be reasonable if the outcome is healing or at least improving.
I also feel the sorrow of the parents. They would want to see Indi healthy and happy, with a long and happy life in front of her, but this cannot happen with this terrible disease. Unconceivable sorrow.
Moreover, I feel the physicians and nurses’ frustration – this feeling is very familiar to me – they feel they are ‘torturing’ the poor baby with all the procedures needed in intensive care, and yet, all this effort does not bring anywhere, if not to the inevitable.
Lastly, I strongly feel the grave injustice because the decision about Indi’s care has been taken by a Court. This is really terrible, the most inhuman aspect of the situation.
So then, in the middle of these feelings, how can we know the truth? How can we know what Indi’s destiny is and how can we serve her destiny?
Giussani suggests that “feeling is an essential factor for seeing – not in the sense that it sees itself, but we need to 'focus it'. Feeling does not need to be eliminated, but it must be in its proper place.” Moreover, Giussani states that “morality is the sincere desire to know the object in question in a true way” and “to love the truth more than our ideas about it”.
I wanted to follow this method suggested by Giussani and I put together these points below:
- Indi is ‘given’. She has been created by God, thus her life is precious and needs to be respected ‘as it is’, because she is.
- Since Indi is given no one has the right to decide a priori the date of her last day of life, certainly NOT a Court, not the medical professionals, and, I dare to say, not even the parents, because she is given to them. The last word on Indi’s life is by God only, who gave her life.
- How do we get to know God’s will for her destiny? The Lord will let us know through Indi. God talks through reality, giving us signs. Thus, we need to look at the signs with attention.
- Let’s look at the signs: Indi has an incurable and progressive disease. What does this mean? She will get worse and worse and there are no known treatments. Her conditions are currently very severe, so much so, she can’t breathe on her own and will never be able to do so. Her condition can be defined as ‘terminal’ because, if you turn off the life support, she will die in a very short time. Life support is used for people that, for certain reasons, cannot breathe on their own for a certain period of time. But it is used as a “temporary bridge” until the person is able to breathe on their own.
- I would like to underline that life support is absolutely different from nutritional support (e.g.. Terry Schiavo case). Nutrition is part of the “ordinary care” for a patient and must be offered as long as a person is ‘alive’, which means that the person is breathing, and the heart is beating. Life support is an ‘extraordinary’ means, as I explained above.
- The signs we are observing speak clearly. We need to prepare for the fact that Indi will have a brief life, which could have ended already, without the help of life support.
- However, it’s not so easy. Her parents love her and do not want to “let her go”. Therefore, we need to help them become fully aware of the reality of Indi’s destiny. This is a journey with small steps and that happens with time and patience. Over the past 30+ years I journeyed with hundreds of families on this road and the pathway is different for each family. Sometimes the decision is made quickly, sometimes it takes a long time – weeks, or months.
- I also would like to underline that palliative care is NOT about “just pull the tube or pull the plug and give sedatives for comfort”. Palliative medicine is walking a journey with the family to accompany the family and the infant to his/her destiny.
- Also, the alternative solution “if the parents want everything to be done, let’s do it, put a trach and keep going” it is not right either. What I propose and advocate is a difficult and dramatic journey that keeps in mind all of the factors, including respecting the love of the parents for their baby and the destiny of the baby at the same time. Time, patience, medical knowledge, compassion and affective engagement are all needed.
In conclusion, I believe that Indi’s life must be absolutely respected for what it is. Our role – as medical professionals – is to take responsibility in supporting the parents’ desire of loving their baby. Love for a child is one of the original desires present in our heart – till the point of welcoming the baby’s destiny and accompanying the baby towards that destiny.
Elvira, New York, NY