These touching stories of some of our patients /parents and survivors are filled with inspiration. We are sharing their stories to reach out to the community.
In future we will encourage them to share their journey and experience.
Afterall, Hope is a good thing, maybe the best of things, and no good thing ever dies.
Heart Hero : मनवीर
मस्त. मनवीर म्हणजे *मनापासून शूर* माझा मुलगा गुरु. मनवीरचा जन्म 23 जानेवारी 2019 रोजी झाला. त्याच्या जन्मामुळे आम्ही कुटुंबातील आम्ही सर्व सदस्य आनंदी होतो.
तो कमी वजनाचा प्रीमॅच्युअर बाळ होता पण प्रसूतीनंतर त्याचे सर्व जीवनावश्यक अवयव सामान्य होते पण आम्ही त्याला 24 तास एनआयसीयूमध्ये निरीक्षणाखाली ठेवले होते.
त्याच्या वयाच्या दीड महिन्यानंतर संध्याकाळी त्याला अचानक टॉनिक क्लोनिक स्पॅझम विकसित झाला आणि बेशुद्धावस्था आली, मी एक डॉक्टर आहे मी त्याची तपासणी केली तेव्हा तो Cardio respiratory arrest मध्ये सापडला मी ताबडतोब CPR केले आणि त्याचे कार्डिओ रेस्पिरेटरी फंक्शन रीस्टार्ट केले आणि मी त्याला ताबडतोब काळपांडे हॉस्पिटलमध्ये हलवले जेथे डॉ. अतुल काळपांडे सरांनी पुढील मूल्यमापन आणि व्यवस्थापनासाठी त्याला चिरायू हॉस्पिटलमध्ये हलवण्याची सूचना केली. पुन्हा चिरायू हॉस्पिटलमध्ये त्याला व्हेंटिलेटरवर ठेवण्यात आले सर्व आवश्यक तपासण्यांमध्ये हृदयविकाराची जन्मजात विसंगती Coarctation or Aorta म्हणून लक्षात आले . तेथून आमचा प्रवास सीएचडी सुरू झाली त्यानंतर पुढील व्यवस्थापनासाठी आम्ही त्याला नागपूर येथे हलवले. त्याची बलून अँजिओप्लास्टी करण्यात आली ती 5 दिवसात अयशस्वी झाली, त्यानंतर डॉ. आम्हाला ताबडतोब शस्त्रक्रियेसाठी जाण्यास सल्ला दिला.आमच्याकडे तेवढा निधी उपलब्ध नव्हते. मी माझ्या वरिष्ठ मार्गदर्शक डॉ. पल्लवी चतुर्वेदी यांच्याशी चर्चा केली. कांदिवली मुंबईतून तिने मला माझ्या मुलाच्या जीवनाची आशा दिली. तिने आम्हाला हृदयाच्या शस्त्रक्रियेसाठी वाडिया हॉस्पिटल परळ मुंबई येथे आणण्याचे सुचवले. तिने रोटरी क्लब बॉम्बे मार्फत आर्थिक मदत करण्याचे आश्वासन दिले. त्यानंतर आम्ही मनवीरला वाडिया हॉस्पिटल मुंबई येथे हलवण्याचा निर्णय घेतला. त्याला रुग्णवाहिकेने नागपूरहून मुंबईला हलवा.
आम्ही सकाळी 1 वाजता मुंबईला पोहोचलो मी मुंबईसाठी नवीन होतो.डॉ.विशाल काळे सर वाडिया हॉस्पिटलमध्ये कर्तव्यावर कार्डियाक फेलो होते त्यांनी आम्हाला कॅज्युअल्टीमध्ये प्रवेश दिला आणि आम्हाला माझ्या मुलाच्या शस्त्रक्रियेसाठी मार्गदर्शन केले.
ज्या दिवशी मनवीरवर डॉ.बिस्वा पांडा सरांनी ह्रदयविकाराची शस्त्रक्रिया केली, मनवीरला हृदय शस्त्रक्रिया ICU मध्ये हलवण्यात आले.जेथे तो 8 दिवसात बरा झाला.आणि रुग्णालयातून नियमित पाठपुरावा करून डिस्चार्ज देण्यात आला.शस्त्रक्रियेच्या 6 महिन्यांनंतर तो निरोगी होता, वजन वाढणे, सामान्य माइलस्टोन विकसित करणे, परंतु 2 डी इको डनमध्ये सौम्य स्टेनोसिस दिसून आले आणि त्यानंतर पुन्हा बलून अँजिओप्लास्टी केली गेली. आणि त्याला 6 दिवसात रुग्णालयातून डिस्चार्ज देण्यात आला.
आता आमचे मास्टर.मनवीर 4 वर्षांचा आहे.शारीरिक हालचालींवर कोणतेही बंधन नाही,सध्या हृदयाशी संबंधित औषध नाही.तो बरा आहे.
मला शस्त्रक्रियेसाठी सुचवणाऱ्या आणि मार्गदर्शन करणाऱ्या डॉ. पल्लवी चतुर्वेदी मॅडमचे मी आभार मानू इच्छितो. सर्व रोटरी क्लब सदस्य श्री. राजेंद्रजी अग्रवाल सर, सौ. दीपा गोएंका मॅडम आणि मला मदत करणारे इतर रोटेरियन डॉ. बिस्वा पांडा सर, डॉ. श्रीपाल जैन. सर वाडिया हॉस्पिटल कार्डियाक विभाग टीम आणि डॉ.विशाल काळे सर. डॉ.अतुल काळपांडे सर, डॉ.आशुतोष पालदीवाल सर आणि चिरायू हॉस्पिटल टीम.
Heart Hero
Dilated Cardiomyopathy with Left Ventricular thrombus
This 8 year old was referred from Washim for difficulty in breathing and massive cardiomegaly on X-ray. He was in cardiogenic shock.
When we did echo he had ejection fraction of about 11-15% along-with a large 18 x 13 mm thrombus in left ventricle.
We started him on ionotropes (dobutamine for 3 days followed by Levosimendan) with diuretics and heparin infusion.
His condition improved and he was off oxygen and ionotropic support. IV Heparin was stopped and LMVH and aspirin were started. Thrombus reduced in size and he was discharged after 17 days.
He is in follow up for last 8 months. His LV-EF has improved to 37-39% and clinically he is doing well.
Antenatally Detected TOF
Hello
My name is Dr KMB.
I am veterinary doctor working as Livestock Development Officer at Akola .
This is story of my heart hero Sharvil.
Sharvil is among twin brother. He was born with tetralogy of fallot which was detected during my 20 week pregnancy by my gynecologist .
I got pregnant in September 2020 with twin pregnancy
But during 20 wk scan the sonographer / gynecologist seemed to be having difficulty getting everything they needed, they said their seem to be something not quite right with the blood flow between the chamber of your babies heart. They sent us for a second opinion then we went to a paediatric cardiologist . After check up doctor said your baby has congenital heart defect called *Tetralogy of fallot*, which will require open heart surgery after birth.
We were all out of our mind for the loss of idea of normal and routine birth. There was nothing that could be done during pregnancy. He was safe in my womb so we had regular scan and check up.
Then on 5th May of 2021, my twin baby boy arrived pink and crying....
One good piece of news was baby would not need immediate surgery after delivery or not need to inject any injection.
My both babies was in NICU for 12 days under pediatrics observation .
After 12 days babies were welcomed at home. Sharvil was feeding well . we had regular visit to the pediatric cardiologist. We regular check his saturation and done ECHO at paediatric cardiologist hospital. His saturation remained very good 96 -99%. He was also thankfully putting on weight and so his surgery was planned on age of his 6 month.
On November 2021 we admitted him to the hospital for surgery, Surgery was successful they have done
trans RA VSD closure with Goretex patch
+ RVOT resection+MPA -RVOT augmentation by trans annular pericardial patch.
To imagine at such a young age, he could go through this was beyond comprehension.
10 days later after his open heart surgery and full repair we were able to take Sharvil home.
He was a completely normal baby.
Now sharvil is 3.5 years old now .He is asymptomatic, now happy ,healthy and very active kid. He is bit of our heart and make us prouder everyday.
I would like to thanks Dr. Vishal Kale Sir (Paediatric cardiologist Spandan hospital Akola)
Dr.Jhelum Deshmukh mam (Gynecologist Deshmukh hospital Akola)
Dr. Abhay Bhoyar (Paediatric cardiologist Nagpur) &
Dr. Shiv Prakash Krishna Naik.( Paediatric cardiac surgeon HN Reliance hospital Mumbai)
And all nursing staff of the hospital.
For any families going through a diagnosis of heart condition in there new baby, I hope that our story offers some hope.
Having a heart problem is not the end of thing but a different beginning of their lives and you are not alone.
Regards
Sharvil s Mom
Dr.KMB
Obstructed TAPVC
This kids mother had fever (COVID positive) in third trimester of pregnancy so was referred from private nursing home to government hospital for delivery. Baby was stable at birth, and was discharged on third day.
On around 20th day of life he was admitted for severe distress and desaturation. After COVID was ruled out, Echo was done. Echo showed obstructed TAPVC with severe PAH. So the baby was admitted in NICU for stabilisation, however he had very labile saturations and oxygen dependency.
The case was discussed with Cardiac surgeon in Wadia Hospital for Children, Mumbai. And it was decided to shift the baby to Mumbai in cardiac ambulance. Due to financial constraints parents decided to shift the baby in train with oxygen cylinder.
They managed to reach Mumbai just in time; however the clinical condition of the baby worsened due to long journey and on admission baby needed ventilatory support. The baby stabilised and subsequently underwent TAPVC repair.
Now the baby is 6 months old and in regular follow up, the child is asymptomatic with good weight gain.
Pulmonary atresia with duct dependent pulmonary circulation
This baby was referred on day 6 of life for desaturation and murmur. On admission he had saturation of 50-55%; Echo was s/o pulmonary atresia with duct dependent pulmonary circulation.
Patient was immediately admitted in NICU and Prostaglandin infusion was started. Patient gradually stabilised and saturation improved to 80%. Parents were counselled regarding need for urgent PDA STENT or BT shunt.
With the financial help from relatives it was decided to shift patient to Kokilaben Dhirubhai Ambani Hospital, Mumbai.
Patient was shifted with PGE1 infusion. Patient underwent CT SCAN and after confirming suitability, PDA Stenting was done under scheme at minimal cost. (Actually the cost was even less than the cost of shifting the baby to Mumbai).
Till 3 months age, patient was in routine follow up he was gaining weight and saturations were steady around 80-85%.
Unfortunately just 15 days prior to his planned 2nd stage operation, he had severe respiratory infection and we lost the child.
However, now we have 3 such babies who have undergone PDA stenting and are in close follow up with us.
Transposition of Great arteries
This 25 day old baby was admitted for severe respiratory distress and desaturation.
ECHO was s/o Transposed Great Arteries with Intact Ventricular Septum.Patient was immediately admitted in NICU. Prognosis was explained and the need for urgent balloon atrial septostomy and Prostaglandin infusion explained to relatives.
Patient was started on prostaglandin infusion and condition gradually stabilised and saturation improved to 80%. Parents were counselled regarding need for urgent Arterial Switch Operation.
Patient was shifted and underwent successful arterial switch operation.
Patient is in routine follow up, he is gaining weight and saturations are steady around 95-97%.
Meconium Aspiration with Suprasystemic PAH
This 2 day old baby (born after 14 years of infertility) was referred for severe respiratory distress and cyanosis. There was history of foetal distress with meconium stained liquor. Patient was immediately intubated and required very high pressures on ventilator.
Echo was s/o small PDA shunting right to left and moderate TR (RVSP = TR jet gradient 77mmHg + RAP). He was started on Milrinone, Sildenafil and Dopamine. He required prolonged ventilation (10 days) with very high pressures. He had oxygen dependency but gradually improved and was discharged after prolonged ICU stay of 28 days.