Wednesday, December 7, 2011

GRAPHIC! Baby Emma Finally Got Her Shunt







As in the first post about Emma, the photos in this one will make you want to cry. It's been almost eleven weeks since baby Emma joined us at SCH--a wasted, frail, very dirty, neglected little baby with an open myelomeningocele, marasmus, club feet and severe, unshunted hydrocephalus. We got her via the government Child Welfare department--she was found outside a government hospital by a sweeper and was admitted and "managed conservatively" there until either they or the Child Welfare department decided she should be transferred to us. The shock of seeing her condition brought sobs to my throat, and I took her that night eight hours to Hyderabad to get better help for her. Unfortunately, she was too weak to clear for surgery, and after a few days of inpatient care to stabilize her, they discharged us and told us that she had to gain weight before she could get her shunt.

As hard as we tried, we couldn't get Emma to gain much weight back in Ongole. The pressure in her head caused her to vomit, and then she would aspirate. She never smiled, just cried weakly.  Meanwhile her head circumference grew and grew. When she was about 3kg, we took her back and got her admitted for surgery, but after a few days the anesthesiologist refused to clear her for surgery and she was discharged and we were sent home to await her death.

We didn't give up, though, and because of your prayers and God's goodness, Emma found favor with a neurosurgeon and anesthesiologist at another hospital. While they agreed that she wasn't yet ready for surgery, the neurosurgeon did CSF taps every 72 hours, drawing off around 60 ml of fluid from her brain each time until she was fit for surgery to help manage the pressure. It was discovered that Emma had chronic meningitis, and the NS and pediatrician fought that with antibiotics. The lab reports also indicated that Emma has tuberculosis, so they started her on a treatment program for that. This hospital has fought for her intensely, and it has brought us so much relief. Emma wants to live--she has fought so hard for so long!
Manikyam, the caregiver who has stayed with Emma for the past month, prays over her.
Emma about 3 weeks ago

Yesterday the doctors decided that Emma was well enough to withstand shunt surgery, but also told us that they couldn't guarantee she would not need ventilation afterward. Emma had her operation this morning, and she came through it well, not needing a ventilator or other significant intervention. Below are two pictures of Emma taken post-op...



Emma just out of shunt surgery. It took over a month of ICU treatment to get her well enough to clear for surgery.


Poor, sweet baby...
I'm relieved that she's come through as well as she has, but sad that her head has grown so much since we received her. Relieved that her meningitis and tuberculosis were diagnosed and are being treated, but sad that her little body has been fighting two horrible illnesses for so long.

If this shunt functions as it should without blockage or infection, her head circumference should decrease some and she should begin to feel better. Please pray with us against infections and complications, and that the skin covering the tubing will remain intact. Also pray that she would put on weight and get strong.

This isn't the last surgery Emma will need. Her meningomyelocele lesion will need to be operated on and her spinal cord detethered (released from the tissue to which it has adhered). A friend whose daughter has spina bifida told me that the way Emma holds her neck may help to give some slack to her spinal cord and relieve the tension. After the next surgery, when her cord is freed, she may not feel the need to arch her neck and hold her head the way she does.

This is such a difficult time in this child's life, but by God's grace and with patient, loving care over the next few years, Emma could begin to thrive. It's been SO hard to watch her suffer--we all just want to see this baby laugh and smile...

Thanks so much to all who love Emma!

7 comments:

jewell said...

This is so sad, so hard...but I'm so glad you shared it with us (w/ a warning as children usually gather to see)Praying

Jody said...

What will happen to baby Emma if/when she begins to improve and grow stronger? Is there a family for her somewhere?

sarah bess said...

Hi Jody, I hope that there's a family for Emma somewhere...

Brandie said...

It's obvious to me, by just the fact that she has survived so many horrible physical issues, that her will to live is incredibly strong. She must have a very important reason to continue existing here with us, instead of succumbing- which would be so easy. You are performing the work of angels by administering to her, I pray she will keep fighting.

Our Family said...

her pose is also one that children with severe reflux do... praying for her

His Special Kids' Families said...

I am praying for the Lord's will regarding Emma...

Melanie said...

I can't believe that I missed this post about Emma.We just left to China on the day this was posyed and brought our daughter home on Dec 23. I am still praying and have been for her healing and think of her often. I hope and pray she is recovering and I wish that I could be there for her. Sending my love and prayer that Jesus will touch her and heal every affliction. praying for her to grow and thrive in His love and presence will fill her.
Melanie

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