Operative History / the little one's battle against all odds

Twisha is suffering a lot and so am I. Both of us are facing the hardest days in our life.

fter getting admitted into Grace Ward NICU she had got initial primary care. There was Replouge tube fixed in to her throat from mouth to drain her saliva out continuously. She was getting nutrition through TPN. She had some tests to diagnose any other problem. Her first operation was booked on 1/2/2011, to fix a Gastrostomy tube to feed her, Gap Study and to diagnose if she had any other abnormalities associated with her birth defect.

Post the first operation she was diagnosed with Long Gap Oesophageal Atresia –LGOA, with 4 vertebral body gaps (aprox. 6 cm). And she didn’t have any other abnormalities. She was on Gastrostomy tube feeds since then and up to now.After this diagnosis I started searching on Internet about this birth defect and its possible best solutions. We came to know that there is one best procedure to repair OA baby known as Foker Technique. It was invented by an American doctor many years ago. If the baby is once repaired by Foker Technique then possibilities are higher for her to live a normal healthier life in future. There are other methods as well to repair such a baby. They are Gastric Pull Up, Gastric Tubes and Colon Interposition. But their life time consequences are very poor. Baby will caught in other medical complications as these technique gives replacement to the baby not repair.
There was another option to keep Twisha without operated and let her get elder few days or months and see whether her oesophagus grows itself or not. Because in some cases baby’s oesophagus grows by itself in few days or months as they get older and then surgeon may able to join them. But in some cases it doesn’t happen. There was no guaranty that will grow. So, we decided to have the Foker Procedure started. Foker procedure is a special technique to grow baby’s Oesophagus. This technique stimulates the growth of Oesophagus. It is carried out in minimum of two operations. In first operation surgeon sets up sutures at the blind ends of the Oesophagus and adjust in the way to pull both the ends of oesophagus in order to get them close with each other. And at one stage when both the ends come very close like overlapping on each other they are sewn together. Baby stays under paralysis and sedation for couple of weeks/months.Here is the illustration of the Foker Procedure

So, Twisha had Foker Operation Step I on 15/02/2011. This Foker procedure was done for the first time by her surgeon in the entire Hospital. During the operation surgical team noticed Twisha’s oesophagus didn’t grow by itself. Twisha had sutures in place to grow her Oesophagus. She was not kept paralysed medically as the team was not comfortable doing it. On 25/02/2011 Twisha had gap study in order to see the growth of oesophagus. But Doctors didn’t get expected result. There wasn’t enough growth in oesophagus. After getting this news I contacted Dr. Foker and his team in Boston and discussed Twisha’s progress. Dr. Foker’s opinion was not to join her oesophagus in following operation. But the surgical team in Sydney was confident enough to join Twisha’s oesophagus. So Twisha had her ends of oesophagus joined on 28/02/2011. After 2 days of operation, there was a leakage found at her joining site. Surgeon presumed that it will be healed by itself. But it didn’t and Twisha became very sick and serious. She got infection because of collection of saliva and air inside her body around joining site. She got very sick and had many post operative complications. She had pneumothorax, pseudomonas infection and a lung abscess. She had few bad side operations to treat her complications. She had multiple chest drains inserted into her body to drain saliva and air from inside with help of CT Scans. But her condition didn’t improve and she had to undergo another operation on 09/03/2011 to seal the leakage and to remove infectious liquid. . But again after operation she had leakage and same complications as above. Lot of X-rays and CT Scans and chest drain tubes. She had her right lung collapsed. Nothing was going right. She was very ill. She needed blood transfusion. I had seen her many closed calls. Her condition was life threatening.To save her life Drs. had to operate her again on 11/03/2011 and separated both the ends of her oesophagus and directed the upper part of oesophagus on to the right side of chest and kept it opened through a hole (Oesophagostoma) on chest, so that her saliva could be drained out. And the lower part of oesophagus was closed inside. It was Cervical Oesophagostomy. After this operation Twisha started coming out from all complications. She had very good and fast recovery then. She started smiling on 5th day after operation!

These days were really very traumatic. But thanks to all the Doctors and Nurses in Grace ward NICU. They worked hard to save Twisha’s life and took nice care of her.

Twisha was on good recovery then and had less tube gradually. She was planned to discharge from hospital. She was discharged on 11/04/2011 with Gastrostomy tube feeds and Oesophagostoma (spit fistula, opening of upper oesophagus) on her chest. She has to be admitted to the hospital again for Kimura Lengthening procedure. With this plan Twisha came home.

In the beginning it was very hard for me to take care of Twisha. But my little angel’s smile made a teaching path way for me. She was having fake feed from mouth even though it was just coming out from an Oesophagostoma on her chest. It was making all messy but she was enjoying it. After few days at home I could see Twisha looked healthier than before. She became more active and interacting and most important smiley. I knew that Twisha has to be admitted to the hospital for her next Kimura Operation. I was enjoying each and every moment with her at home.

Her next operation was booked on 04/05/2011 for Kimura Lengthening Procedure. In that operation her upper oesophagus was stretched further down on chest. First 24 hours were really very painful for Twisha and so for me. Over all it went successful and within 3 days she was discharged home.

Twisha had another Kimura lengthening on 01/06/2011. After operation Twisha had complications and she had to suffer a lot. She had an overdose of pain killer. The emergency team came immediately and gave her an anti-pain killer Drug. More over her oesophagus was pulled back underneath her skin and she had got too much swelling around operated site. Her saliva started gathering underneath her skin. And swelling spread out too much around stoma. She was given antibiotics to treat the swelling. It started getting down, but Twisha had to undergo another operation to fix her oesophagus as it was pulled back inside her body. So surgeon operated her again on 06/06/2011 and fixed her oesophagus at previous site where it was before last stretching. After this operation she was on recovery and was discharged home on 09/06/2011.

After this failed Kimura Operation I was very much tensed about Twisha’s future life. It was decided to not to do any operation on her for next few months. In the following appointment with her surgeon we discussed about the future possible ways to repair her. And they expected to do Gastric Pull Up or again to give a gentle retry on Kimura Lengthening few months later.

Move over in the end of June month Twisha’s Mum had to separate from her Dad due to domestic violence. Twisha became homeless with her Mother. Since 1st July Twisha has got only one parent, her Mother.

After her last operation Twisha was doing well. Her growth in other part was normal. She was growing as normal as other baby of her age with Gastrostomy Tube feed. I again contacted Dr. Foker’s team in Boston. I spoke with them regarding Twisha’s current situation and asked their opinion. I sent Twisha’s medical records to them by mail. After reviewing them in their system they gave their opinion that Foker procedure can be done on Twisha. I felt little relief after hearing their words.

Meanwhile Twisha had created some problems in passing her saliva through a Oesophagostoma on her chest and she had few chocking episodes because that Oesophagostoma had started becoming narrow. She was having difficulty in swallowing and passing her own saliva. Day by day Oesophagostoma was getting narrowed and she had to rush to an emergency few times because of chocking. She needed to fix her problem. There were two options for her; have another gentle trial of stretching her oesophagus further down or if it doesn’t seem to be worked then just to dilate the Oesophagostoma.

So Twisha had an operation on 24/08/2011. Her upper oesophagus was stretched further down successfully. Twisha had good recovery and was discharged home on 27/08/2011.

She remained well for few weeks. Again she had chocking episodes because of narrowing of stoma on chest. She had another operation to dilate the stoma on 24/10/11. But within few days stoma started getting narrow again. So she had another operation to dilate stoma on 06/11/11. In this operation Surgeon had put a plastic stent into her stoma just to stop it getting narrow. But because of the stent Twisha was not able to swallow well, so she had same choking episodes, but this time she learnt how to spit out from mouth. So it was less danger to chock. It was hard to keep the stent in. Sometimes it was off and had to insert it back into stoma. It was hurting to her and bled sometimes. It was very awkward dressing on stoma with stent. It was too dirty and yuk and was very unhygienic (because of her saliva and practising sham feeds). Because of these difficulties then it was decided to remove the stent. Just after couple of days I discover that she had developed a bump on her chest where her upper oesophagus was passing underneath her skin. And since then she was not able to swallow and she learnt to spit out from mouth even though she was on regular dilation. Sometimes she was passing her saliva from nose. She had stopped passing her own saliva at all and she kept spitting out continuously. After 20 days that bump started looking red on her skin. So Twisha had another operation of “Revision of Oesophagostomy”. In this operation surgeon had put a cut into her upper oesophagus and made a new opening to drain her secretions. She was hospitalized for 23 days. She is again on everyday dilation since her last operation.

Surgeon here is trying different things on Twisha during her treatment, but because of lack of expertise in this case Twisha is suffering a lot and so am I. Both of us are facing the hardest days in our life. It is really very hard to manage and bring up the baby with medical condition, especially being a single parent and have no more supportive environment. I am struggling hard for my little one’s normal life.

Help To Give Twisha A Normal Life