My angel, Francesca!

It was an early morning in month of May 2008 when I found Francesca, my 4months old baby gal looking lethargic and seems sleepy most of the time.  She has been throwing up her milk frequently over the last one week, we have seen GP and her Pediatrician but all said it is a common symptom of baby influx of milk or maybe indigestion.  She looks really dry as she couldn’t stomach her milk each time we feed her.

Noticing that she is not in her normal self, as she is a very active and happy baby, we quickly sent her to KKH. Doctors and nurses surrounded her and put her on drip since she has been quite dehydrated. I requested to breastfeed her with some milk as Francesca was crying out for milk. Doctor said “only a little please”.  Both my hubby and I were in anxiety and confused as doctor seems quite concerned over her condition. I thought it would be just any normal baby milk influx or like GP said indigestion.

Francesca was ward into the High Dependency Ward as they wanted to put her under observation and perhaps conduct more tests to determine her condition. There was an order from the doctor to conduct a blood test on her every hour. My heart hurts with every prick on her little finger and she cried out loud. She is a very chubby baby and with very fair skin, hence doctors had a hard time looking for her vein to draw out blood. Each time they need to call a Senior Medical officer or a Registrar when they need to draw out blood for tests.  I cried with her. I couldn’t bear with her cries, my husband stayed with her when they drew the curtain to do the blood test, I chose to walk out and not hear or see anything. Within a few hours, she has plasters all over her ten little fingers, and prick holes can be seen. It’s been most heartbreaking moment for me when I see my four months old baby suffering through this..

After one day, she seems better and thriving again as a happy baby. Doctor had also lessened the number of blood tests so that our little gal won’t be too stressed out and could have a good rest. I thought the ordeal would be over and we can go home soon. But no..

Finally, the Registrar brought a Specialist to us; I remembered it was a Saturday. The Specialist was Dr. Tan Ee Shien who specialized in Genetic Disorder conditions. We were lucky as Dr. Tan was on duty that weekend, and the Registrar has informed Dr. Tan about our gal’s condition and she decided to come and review her. She saw Francesca and informed the hospital that a special test would need to be conducted. So more bloods were taken and as it was a weekend and the test needs a few days to revert since it is done overseas, Francesca got to stay on and be observed for few more days.

Monday, Tuesday came and Francesca looks really good and active. I was happy hoping that all seems ok and the test that Dr. Tan did would only be a routine check and everything should be fine.  I went down for dinner alone as hubby was at work.  Shortly, I received a call from a Senior Doctor and Dr Tan wanting to see me immediately, they sounded serious. They said my daughter has this condition called Methylmalonic Acidemia. I couldn’t make out what is that as it seems so foreign to me.  My heart was thumping. I called my hubby and he came back to the hospital immediately.

We met both Doctors in the Parent counseling room. I remembered we were both staring at the doctors when they told us again my daughter has been diagnosed with a metabolic disorder condition call Methylmalonic Acidemia, in short MMA. First reaction was “What’s that”?… Dr. Tan looked really serious and explained the condition to me. I stared in disbelief and tears started rolling down uncontrollably, asking “why my little girl”?… That night, we both sat in our car and started crying, I seen my hubby for the first time looking all vulnerable..

What is MMA?

There are only few MMA cases in Singapore and this is a rare condition. There is no family history of such condition in my family trees. MMA is a genetic metabolic disorder where the patient has a short of protein enzyme to digest or breakdown protein. That means for life, Francesca has to be on a strict protein restriction diet and she needs special medications for life. Any excess of protein build up in her body could be fatal. So her diet needs to be carefully managed to ensure there is no short or excess of protein daily.

KKH’s Doctor and Nurses have been really good and doting on Francesca however we do feel that we need more support and assistance in administering what is critical in her dietary.

How we feel about the current support from KKH?

Her daily dietary includes special milk powder that are protein free (Prophree), and another milk powder (Propimex 1) with ‘good’ protein for her growth. And drinks it at least 4 times a day. These 2 milk powders are only available from Abbott International, a pharmaceutical company who specialized in such special products. The costs of both Milk powders are almost doubled of what are the common milk products on supermarket shelf. The initial purchasing of this milk powder was done via KKH dietary department as these are controlled and can only be brought in from US.  However KKH decided to pass the distribution back to Abbott, and subsequently this year back to KKH again.

Early this year when KKH took back to process the order, they decided to increase the price of each can of milk to about a 20% higher. Substantially higher from previous, and is a toll financially for all. Each time we need to make a 6 months advance order and we have to order in bulk as this is a daily dietary for MMA patient. So you can imagine the cost for each order and with this 20% increase, I can imagine how much burden it is weighing on family with low income.  KKH explanation is that this is to support their administration of the ordering and distributing the milk formulas. But it is not a justifiable increase, considering that such milk formulas are for needy children with special conditions and is not a luxury item per se.

KKH as a public organization and if their motto is ‘We put our patients first at the heart if all we do’. However, do they advocate that value if administering an order of milk formula means putting the financial burden on the children and the family? We hope to seek the support and assistance from the relevant body to review this.