Hotz Family

Hotz Family

Wednesday, March 23, 2016

Heartbreak

Psalm 34:18 "The Lord is close to the brokenhearted and saves those who are crushed in spirit."

This story breaks my heart.  It actually happened last August, but at the time, the wound was too fresh, and so I couldn't bear to actually publish my post when I wrote it.  Now, as some time has gone by, I can share it. I feel like Easter week is the right time to do so. Being a mother and a physician, I've always worried how I would handle it if one of my pediatric patients died. It's my worst nightmare in medicine, and it happened in August.
My little patient was a 25 day old newborn girl. I will call her Elena in the story. She had been born with Pierre Robin Syndrome at our hospital. That means that her jaw was set back too posteriorly in her head, giving her a small chin and a tongue that could easily block her airway. She also had a cleft palate which made it impossible for her to breastfeed and very difficult to bottle feed. She was a sweet pretty little baby girl despite her issues and everyone had high hopes that she could be put on the list for cleft palate repair with a visiting ENT specialist in the future. She went home doing fine after delivery and followed up a couple of times in clinic for some slow weight gain.
I met her for the first time when she was 25 days old. Her parents brought her from the hospital in La Ceiba because they felt that she was getting poor care there and they wanted her to have the best chance possible. Both of them doted on her as if she were their only child and not the second-born. Apparently, she had gone to the public hospital for trouble breathing. She was admitted to the pediatric ward, but after a few days there, had started to worsen and grow listless. I later learned that all of the pediatric patients are kept together in a ward at that hospital and parents are only allowed to visit for 15 - 30 minutes every 3 hours to nurse or bottle feed the babies. Of course, because of her cleft palate, she needed longer than that to feed, so I suspect that she got worse at the other hospital because she became dehydrated. They started her on IV fluids before sending her to Loma de Luz, and by the time she arrived, she had perked up and looked pretty good. Her lungs sounded clear and her vitals were all stable. I was a little worried because she had not gained much weight since her last visit in the clinic, but other than that, she seemed stable. She had been diagnosed with "bronchiolitis" and placed on two different antibiotics in La Ceiba. I continued her IV fluids and switched her medications and waited. . .
For the next couple of days, she did well except for one thing .... She wasn't eating enough. She ate about half the amount that was necessary for a baby of her age. I was torn about what to do. Could it be a by-product of her illness or was it the source of her listlessness? Or was something wrong with her belly? Was she too weak to eat? Was the cleft palate bottle not working for her? Was the mom doing something wrong when she fed her? I finally decided to put an orogastric tube from her mouth to her stomach in order to tube feed, just until her strength returned. She did fine the first night, except that the tube came out. I replaced it the next morning when she continued to not feed.
Then, at about 5 pm the next day, as we were sitting down to eat dinner, I got a call from the nurses' station. Elena's mother was worried about her because she looked rather pale and her oxygen saturation was wavering down to the 60s. I went in to examine her. One glance and fear struck my heart. She looked bad. Not horrible, but the kind of bad that makes physicians nervous because it usually gets worse unless some kind of intervention occurs. She was pale and clammy, which made me think her blood pressure was too low, and she was struggling to breathe, using all of the muscles of her chest and belly to get her lungs to expand. Her oxygen saturation was poor. Sometimes it was normal, and sometimes it was down in the 50s. I knew I would need help.
I called our pediatric doctor, Judy, in to help me. She wasn't there long before we started to give Elena accessory breaths with a bag / mask system. We called for more help in order to intubate. That was a problem though... Her disease, with her jaw very posterior and tongue that obstructed her airway, made intubation extremely difficult. We asked her family to wait outside while we attempted to intubate. They didn't understand the gravity of the situation.
Her heart stopped while we were intubating her. We did CPR for a long time, and every so often, we would get her heartbeat back for a minute or so, but then we would lose it again. We gave epinephrine. Every so often when she had a pulse, her little eyes would open slightly and look around. Then, as I was holding her chest in my hands and giving heart compressions with my thumbs,  her little body went stiff for a moment and her eyes closed for the final time. I knew that she had just died in my hands. Judy called her family in to see us performing CPR before telling them it was time to let her go. Her mother walked in and didn't even wait for us to explain that we wanted to stop the CPR. She reached onto the NICU bed and scooped Elena up to her chest, wailing. Her husband came and held them both while he cried.
I stayed with Elena's mother for the next two or three hours, weeping and praying and rubbing her back. She held Elena close and whispered into her ear how much she loved her. We took off all of the tubes and lines and washed her little face with a cloth. Her mother dressed her in one of her sweet pink onesies and then talked to her. "I love you so much my sweet one. How can I go on without you? What am I going to do with all of your things? What am I going to do without you?" At one point, she used her phone to text her sister: "My daughter died. Come, I need you."
Eventually, the extended family arrived and Elena's mother lay on the bed staring at the wall, not speaking to anyone, while a cousin held Elena's body. Her family thought we had medicated her mother.
I finally went home and cried my eyes out. It was already about 11 pm, but went in and nursed Josiah just to feel his sweet little body, full of life, near me. I felt raw for days. Guilt welled up as I wondered if I had done anything wrong that caused Elena's death. I felt dissatisfaction because we never knew what exactly caused her death, so that I couldn't even learn something in the hopes of helping another child in the future. I felt fear because I had seen a mother's worst fear realized and wondered if I would someday go through that horror myself. I felt regret that Elena died in my hands instead of her mother' s embrace. I felt pain as I had flashbacks of her death. I felt cheated by God: "Why would you take her? Why did you create her for such a short life? Why would you give this pain to her parents?" But most of all, I felt grief for her mother and father and the pain that I couldn't save them from when they had put their trust in me.

Three weeks later, I saw Elena's mom again. She was still drowning in grief and came to me for help.  She was having dreams about Elena. She had seen her as clear as day, had heard her cry, but when she tried to touch her, she couldn't reach her. She had prayed fervently to God to let her touch her daughter in her dreams. She was asking Him why He would take her after only one month. She had gone back to work but people and clients kept asking her about her new baby, so her wound was constantly reopening.
What could I say to her? This is a hard conversation even in English. I felt out of my depth in Spanish. So I asked one of our counsellors, Lucy, to come in and help me talk with her. Lucy listened as Elena's mother poured out her sorrow over her lost child. Lucy said many things back to her, but the most important thing to me that day was this: "I admit that I can not understand exactly what you are feeling because I have never lost a child, but I can tell you that your Father in heaven . . . He knows exactly what you are feeling. His Son, Jesus, came to earth, and died for us. God the Father does know the pain of losing His child." I hope that Elena's mom was able to take some comfort away from that meeting. I did. I was so stuck in my own regrets and in worrying about how I couldn't possibly understand her pain, that I myself forgot that her heavenly Father knows her pain, inside and out.
Easter has a new meaning to me this year because of Elena's life and death. The grief that I was exposed to through caring for her and her family is just a fraction of what God the Father and His Son, Jesus, felt when they were separated by our sins on the cross.

Isaiah 53:3-6 "He was despised and rejected by men; a man of sorrows, and acquainted with grief; and as one from whom men hide their faces. He was despised, and we esteemed him not. Surely he has borne our griefs and carried our sorrows; yet we esteemed him stricken, smitten by God, and afflicted. But he was pierced for our transgressions; he was crushed for our iniquities; upon him was the chastisement that brought us peace, and with his wounds we are healed. All we like sheep have gone astray; we have turned - every one - to his own way; and the LORD has laid on him the iniquity of us all."

Why would God the Father and Son bear the exquisite pain of separation described in Isaiah 53? Why was it the "will of the Lord" to crush Jesus, as stated later in the chapter? 

Romans 5: 8-10 "But God shows his love for us in that while we were still sinners, Christ died for us. Since, therefore, we have now been justified by his blood, how much more shall we be saved by him from the wrath of God. For if while we were enemies we were reconciled to God by the death of his Son, how much more, now that we are reconciled, shall we be saved by his life."

I continue to pray for Elena's mother and father. I pray that God will ease their grief. I pray that He will bring them new joys. I pray that He will increase their faith and that they will depend on Him more fully this Easter because of Elena's life. Thank you, Jesus, for the sorrow and the sins that you bore so many years ago in order to reunite us with our Heavenly Father. 

3 comments:

  1. Thank you for sharing this story and your heart. Praying for them and for you. Thank you for all you and your family are doing in the name of Christ. May you all feel His love, grace and peace with joy this Easter! He is risen!

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  2. Beautifully written Anne. So amazing is our father's love for us that he gave us his son and understands our suffering. Love you.

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  3. Thank you so much for sharing. That sounds like such a painful experience, and no doubt one that you will remember forever. The earth groans as it waits for redemption and freedom from death.

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