Jane Adelynn Lidra is a baby girl born on
Thursday,19 January 2012 in Bandung , Indonesia. It was a normal delivery.
Weight : 3.47 kg Height : 49.5 cm.
On delivery, doctor inform that the water was
greenish , and the baby suffered meconium aspiration syndrome (MAS,
alternatively "Neonatal aspiration of meconium"). Praise God, the
baby was survived. MAS is a medical condition affecting newborn infants. It
occurs when meconium
is present in their lungs during or before delivery. So, the doctor need to
clean Baby Jane’s lungs and stomach.
23 Jan, pediatric check on little Jane and found
there is something wrong with the heart. They did Ultrasound to make sure.
24 Jan, Ultrasound report came out, stating there
is a heart defect and the doctor refer this case to a hospital in
Jakarta.
26 Jan , at 8 pm, Baby Jane was transferred to
Jakarta using ambulance.
They did Echocardiogram on Jane’s heart.
Shockingly it was found that the baby has HLHS ,
Hypoplastic left heart syndrome which is a complex and rare heart defect
present at birth (congenital). In hypoplastic left heart syndrome, the left
side of the heart is critically underdeveloped.
When the baby is born with hypoplastic left heart
syndrome, the left side of the heart can't effectively pump blood to the body,
so the right side of the heart must pump blood both to the lungs and to the
rest of the body.
These conditions affect the baby respiratory.
Baby Jane is using oxygen to help her get the sufficient oxigen. Since she was
born, Baby Jane has not come home.She was staying in ICU until today.
Unfortunately, as this is a complex rare heart
defect, the doctors not suggest to have the heart surgery here. The baby
will need 3 stage of high risk heart surgery. The post operation also could be
very stormy which is unable to be handled here. So far, surgery done here has
very low sucessful rate.
The 3-STAGE SURGICAL PROCEDURE is :
An alternative to a heart transplant is the 3-Stage
Surgical Procedure. The 3-Stage Procedure reconstructs the child’s heart
allowing it to work using only two of the heart’s four chambers.
The first
stage is called the Norwood procedure, or the "Modified Norwood" which was developed in 1979 by
Dr. William Norwood. Because the left ventricle cannot pump blood adequately
out to the body, the Norwood procedure allows the right ventricle to pump blood
to both the lungs and the body. This surgery is usually performed during the
baby's first week of life. A new version of this first surgery is called the
"Sano Shunt." The patient
family may ask their surgeon about the pros and cons of the traditional Norwood
vs. the Sano Shunt, how many of each he has performed, and what the success
rates are. (Another variation is the "Hybrid
Procedure" which does the 3 stage in a catheterization, a surgery,
then another catheterization. The benefit is fewer surgeries, however, only a
certain number of babies are candidates, and the results may or may not be
better than the regular 3-stage.)
The
second stage procedure, called the Hemi-Fontan or Bidirectional Glenn, reduces the work of the right
ventricle by allowing it to pump blood only to the body, and allowing most of
the blood to flow automatically from the body into the lungs. The second stage
is performed when the pressure in the baby's lungs has decreased, no longer
requiring the pumping action of the right ventricle to get blood into the
lungs. This surgery is usually performed at about 4-6 months of age when the
traditional Norwood has been performed. When the Sano Shunt is performed, the
second surgery usually needs to be done earlier - at about 3-4 months of age -
and the babies need constant monitoring to determine when they are ready for
the second surgery.
The third
and final stage, the Fontan, allows the rest of
the blood coming back from the body to go to the lungs. There are two different
ways to perform the Fontan: The Lateral Tunnel Fontan, the traditional
approach, and the newer External Conduit Fontan. The Lateral Tunnel Fontan is
usually performed at about 18 months - 3 years of age, and the External Conduit
Fontan is usually performed at about 3-4 years of age.
The
External Conduit Fontan uses an external conduit, or tube, that is placed just
outside the heart. It is hoped that by using this conduit that the potential
for arhythmias will be greatly reduced in the future. However, this is a
relatively new procedure and the outcomes will not be known for several years.
It is usually done later than the Lateral Tunnel Fontan because the child has
to be big enough to handle a conduit that can handle the blood flow as the
child grows.
As Baby Jane is the only daughter of Dany and
Devi, they try their best to seek for help in other countries. They ve tried to
contact cardiologist in Singapore, Australia and Japan. After reviewing the
echo and medical report, they reply to the parent that this is a very difficult
case and need a very high expertise to handle. The surgery is often need to be
done urgently, days after the baby born. And for sure, also very costly. One
even sincerely mentioned that they would take the case if the patient is
a billionaire as it will cost extremely high.
Though in fact the surgery is urgently needed within first week of life. In
HLHS case it is not sure whether the baby will survive using only
prostin therapy. The therapy is necessary to keep Jane’s PDA (
patent ductus arteriosus ) not closing.
Having this kind of situation, we only has two ways : bring the baby home or
do anything we can to seek for medical help. Dany and Devi choose the
second way, the hard way, to do their best for baby Jane.They believe that
nothing is impossible with God.
God is our Healer and Provider.
Would you pray for Baby Jane ? Many people choose an easy way to let go
their babies and surrender. But this parent choose not to give up.
Their trust is in Jesus. As long as God show the way, they will keep going.
Jesus is the healer and He could use anyone and anything to help this baby get
the healing; her doctor, her parents, even me and you. Should God open the way,
they will take their loved one to Japan immediately.
Would you become part of their struggle ? Become part of a great force of
love that will not give up even when the way is so dark.
Please pray for this beautiful Baby Jane. It s not a small matter. Pray is
powerful and Jane urgently need it.
