Little Côme was sent home for palliative care; a year later, he's alive and winning hearts.
Every once in a while, circumstances make it impossible to forget that life is a gift from God.
On June 6th, 2017, a baby boy named Côme de Cacqueray came quietly into the world. After being diagnosed with a malformation below the bladder (like a plug that prevents the flow of urine out of the body), which damaged his bladder and kidneys during gestation, the child would need his parents, doctors, and nurses to fight for his life. Friends rallied around him in a growing prayer chain, and despite the odds, little Côme has now celebrated his 1st birthday.
Aleteia: Please tell us more about Côme.
Ségolène and Aurélien de Cacqueray: Côme was born in Paris, about 200 miles from our home and from his brothers and sister. After a month of care and operations, the doctors informed us that his kidneys were failing and that nothing could be done for him. Côme began palliative care on July 12. We brought him home so that he could benefit from as much family time as possible. The summer passed and Côme was still with us — weak, but very present. The doctors told us that he would sleep more and more and eat less and less. Instead, he was becoming increasingly alert and continued to drink his bottles in small doses. At the end of September, Côme was evaluated again. To our joy and to the astonishment of the doctors, his condition had improved so much that it was determined he would live. What a victory! Little Côme is a warrior. The Blessed Virgin and St. Charbel protected him.
What in particular surprised the doctors?
Kidney failure has grave consequences throughout the body: slow growth, diminished muscle mass, lack of appetite, etc. Creatinine levels are a marker of kidney function. For a baby, creatinine should be at around 40 and for an adult between 100 and 120 (if I remember correctly — we’re not doctors!). Côme’s creatinine level was 480 the week after his birth. Then it descended to 270 and stabilized there after he received dialysis in June. This level is much too high for a baby, and it was poisoning his blood. The doctors couldn’t do anything for a baby so small. They explained to us that he had only a matter of days or weeks to live. But he made it to 3 months in September. At that point, the doctors decided to take another blood sample. His creatinine level had descended to 200, then 125 by the end of September. His kidneys had begun to function again. Not well enough for him to survive without medication, but enough so that his life was no longer in danger. The doctors couldn’t explain this sudden drop. The hospital reported that his creatinine levels dropped astonishingly.
Why was Côme so well loved by the nurses?
Côme is a very easy baby to deal with. He doesn’t cry much, even during procedures, changing of bandages, injections, etc. He seeks people out with his profound gaze and doesn’t let them look away. He smiles and laughs easily. When we go to the hospital, the nurses who looked after him for a month and a half after his birth come back to visit him. They said goodbye when we brought him home in July, thinking it was the last time they would see him. Côme is a bit of a mascot. He now receives home visits twice a week. He is the first infant patient (for the nurses who visit their home, Ed.). We live in a rural area and most of the patients are elderly. The nurses tell us they’ll never forget little Côme. They think of him as their happy little baby!
How did you stay hopeful as a family?
When you find yourself in a situation like this, you can react in one of two ways: you can ask “why me?,” close in on yourself, and turn away from God. Or you can pray and stay hopeful. You have to depend on your loved ones, family, and friends. We are thankful to them for surrounding us so well. Every new day with little Côme is a victory. Of course, the news from the doctors was challenging for us, but even in the worst moments, you have to keep faith. My husband supported me, he never despaired. And I leaned on him when it felt like my tears would never stop. We would tell the children, “God has entrusted Côme to us and our job is to love him with all our hearts. No matter how short his earthly life is, we have to shower him with love.” Appreciate his presence every day. And if God takes him back, it’s because he has a great mission to accomplish from heaven. We followed very closely the story of Gaspard (an infant who died from Sandhoff Disease) through the Facebook page his father set up to tell his story. This helped us a great deal in the midst of our challenges. Many thanks to him and to his parents for their example. Gaspard must be watching over Côme from heaven, and his mission is far from complete.
How did his brothers and sister handle the challenge?
His two brothers and sister had a very hard time after Côme’s birth. We were separated for a month and a half and they were only able to see him for two hours when he was two weeks old. They were so eager for him to come home. The news of Côme’s probable death was difficult, but they kept asking us, “Will Côme do this or that when he’s bigger?” They never lost hope. The oldest, who was 7, had a better grasp of what was happening than the others did. But all three were deeply affected by this sad chapter. Now, it’s joy everyday. They enjoy every moment with their little brother. They know he escaped death and continue to pray for him to be completely healed.
Did Côme draw you closer to God?
Yes, Côme drew us closer to God. Every day, I look at my baby and say a prayer to thank God for this wonderful gift. He made us understand the fragility of life. Before Côme’s birth, we had encountered difficulties, but nothing like this. When your child’s life is in danger, you feel powerless, overwhelmed. Only prayer and love gave us hope.
How did your faith sustain you?
First of all, we are convinced that the Blessed Virgin was protecting Côme. Even if he had died, we know she would have welcomed him. As soon as we could, we sang Hail Marys in Côme’s ear while he lay in his incubator. A prayer chain began shortly after his birth. It was incredible to learn that Masses were being offered, that school children were praying and drawing pictures for him. The messages came streaming in and our morale rose. Feeling that we were not alone in this fight was very touching. We received new information daily, both good and bad … we never knew if we would be rejoicing or grieving … but at every instant we placed Côme in the hands of God.
We felt that if he were to die, he would enjoy the fullness of life in heaven. If he recovered, it would be because he has a mission on earth that’s not yet complete. We were also supported by priest friends who guided us during this trial and in our decision making. The sacraments Côme received helped us. He was baptized by the hospital chaplain eight days after his birth, before he received dialysis. When we left the hospital in July, we held a baptismal ceremony for him, where he also received confirmation. This time, our families were present. These sacraments fortified him. He became a soldier for Christ. His fight continued, armed with grace.
What prayer is most important to you?
The novena to St. Charbel as well as a little prayer we recite when we anoint Côme with St. Charbel’s oil.
After Côme’s birth, seeing the severity of the situation, many people told us they were praying to saints. Following a visit to Solesmes Abbey, a friend sent us a prayer to Saint Charbel and some holy oil. Some Lebanese visitors there had spoken of this saint who performs miracles on a certain date each month. Our friend told them about Côme. The man went in search of an image of St. Charbel and a vial of oil. When he returned he gave the items to our friend to pass on to us. The life of this saint particularly attracted us and we decided to entrust our little Côme to him. We said a novena to him in August. Since then, we have said many prayers and novenas to St. Charbel. We bought a small statue of him, which fits perfectly in our prayer corner.
What was the most difficult news for you to hear?
The news that treatment would be stopped … That there was nothing left to do except make sure he wasn’t suffering. I don’t doubt the doctors’ judgment. We even sent the file to another hospital so that they could analyze the situation. In the condition he was in, it was reasonable to expect that Côme would not survive.
What words comforted you?
Following this news, we went to Fontgombault Abbey near our home. We needed spiritual advice. The abbot received us, accompanied by a monk with a degree in medicine. The monk didn’t have Côme’s medical records, but he was able to give us hope. “Children continue to develop until age 3,” he told us. “Keep looking after him. Everything could change.”
What do you see as you look towards the future?
Each day has worries of its own. We can imagine a future with Côme, which is a joy we barely considered a year ago. Now we know that if his kidney deficiency worsens, he might need dialysis. This would mean changes in our family life since we don’t currently live near a hospital equipped for dialysis. But we are at peace.
What was the happiest moment of these last 10 months?
There have been many. Every return home after Côme’s hospitalizations is a celebration! But this year, Midnight Mass on Christmas Eve was particularly moving for us. We were before the nativity, in front of the newborn Jesus, holding our fragile Côme. We had never experienced Christmas this way. A beautiful memory!
Today Côme smiles constantly, laughs, and plays. His eyes are deep and knowing. Like St. Thérèse of the Child Jesus, he seems to be several steps ahead, enjoying a privileged relationship with heaven.
You can follow the family’s Facebook page called Petit Côme for updates.
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