Tuesday 1 March 2016

Our Learning & Experience: Hyperbilirubinemia - Jaundice in Newborns

There is no greater sense of helplessness and heartache for a parent, than to see your child sick or in pain...a newborn baby more over. If you are parent, you will agree with me that you would rather take their place and suffer whatever it is that is plaguing your child.

Joel was born at 6.28 am, after they took him to the nursery for the necessary jabs and check ups, I was wheeled into my room to rest and recuperate. They brought him back to me to breastfeed him and I kept him with me most of the day because our parents and family had come to visit and see Joel. It would seem that all was as it should be. A short and fast delivery, healthy baby and mama...

Then the pediatrician (Dr Hoh) assigned to us by the hospital drops by at about 5.30 pm and casually tells me, that my baby looks very jaundiced and that it is unusual for it to happen within the first 24 hours birth. In this case it is only 12 hours since he was born and it is already very obvious that he is jaundiced. He then advised that first thing tomorrow morning, they would do a blood test to see what his levels are and then decide on the treatment moving forward. I then asked him why not do a test now and find out exactly how high his levels are and we can then decide on the course of action asap. Dr Hoh gave me a really laid back and I would say in hindsight, lame ass answer of something along the lines of not wanting to poke my baby because poor thing, it hurts to take blood. He then hypothesized that it could possibly by a condition called ABO incompatibility. I was of course really worried and started to send whatsapp messages out about Joel's condition. I also started googling ABO incompatibility to read up and understand more about the condition.

I was still undecided about what to do as I was on my own and still recovering. Hubby was busy with work and Chapati. I was still feeling rather uneasy and when Hubby arrived at the hospital after dinner, we had a short discussion and I decided to ask the nurse if we could request for a blood test to check Joel's jaundice levels. The response from the nurse was they would have to ask doctor and I asked them if it was possible for them to give Dr Hoh a call. I also told them that I would be happy to speak to Dr Hoh and explain to him why I was uneasy and asking for the test to be done asap. The nurse seem reluctant and I insisted that she call Dr Hoh. When I did get to speak to him on the phone, things went from bad to worse. He was condescending, arrogant (whilst still polite), sarcastic and didn't bother to address the issue or listen to what his patient was saying. He also said that I was over reacting and that he insisted, we should not subject babies to a heel prick test just to satisfy a mother's over reaction. He ended the conversation saying that he was thinking of the baby and not the mother. He also suggested starting photo therapy first if I was really worried. I was really puzzled and asked him, why would he suggest starting photo therapy and not do the test? His answer: "I just want to make you happy"
The more I think about it the angrier I feel!
  • High levels of jaundice in newborns can cause cerebral palsy,  deafness and brain damage! You know what? It is PREVENTABLE! What if Joel's levels were in that high range? We don't know for sure until a blood test is done to check his bilirubin levels. So which is worse, a little heel prick to draw blood or a lifetime of pain & suffering for the parents and the child?
  • When doctors take their specialist certification, there is a standard of care that they have to adhere to. All I am asking is that the bloody doctor do his job and practice the standard of care that certified him as a specialist rather than his "30 years in the business experience" as he himself says. WHAT IF, this was the 0.01% that didn't conform to his "experience"? Everywhere you read and research says that if a newborn develops jaundice within 24 hours of his birth, their bilirubin levels should be checked immediately. Here are some articles on newborn jaundice from Medline Plus and Babycenter
  • Can you imagine a doctor telling you to be treated with medicines or a procedure just to "make you happy"??
On so many levels there were so many things wrong with the way it was handled overall by this Doctor. As parents it was a very difficult learning for us so I am going to list it here so that we never ever forget it!
  • When choosing a Gynae and a hospital, remember to choose your Pediatrician too! Most of us get caught up with the doctor who is going to deliver our baby and the facilities of the hospital. It never occurred to us how important the Pediatrician is, if something goes wrong with your baby like what happened to us. In our case, with Chapati and Joel, the pediatrician was assigned to us. In both cases, they are doctors I would not recommend to anyone ever!
  • Always follow your maternal/parental instincts, after all this is your child! Don't hesitate to get 2nd or 3rd opinions and never hesitate to change physicians if the physician is unwilling to discuss/advise you on the medical situation of your child.
  • If an advice or a course of action bothers you and doesn't seem to be quite right, it is not! Don't allow yourself to be coerced into feeling as if you are over reacting or being the difficult patient. Once again, it is your health or in this case the health of your child. Never forget that!
  • We should have opted to start photo therapy instead of doing nothing, because we allowed the sarcasm and unprofessionalism of Dr Hoh to influence our decision making. He made me feel like we were totally making a big deal out of nothing.
  • Lastly make sure you buy medical insurance for your child during pregnancy. We are so glad that we purchased a policy for Joel. It helps to allay the cost of treatment and gives you some peace of mind. If you need a good insurance agent to advise you on that, I would be more than happy to share my contacts! We bought PRUmy Child for Joel.

14th February

Joel's test results came back at 9 am at a whooping 17.2 mg/dL or 294 μmol/l! My heart sank! When the nurses brought him back to me in the morning for feeding, he looked really bad with swollen eyes, he was listless and didn't seem to feed well at all.

Dr Hoh then came in to see me not long after his test results came back and said that he will be starting Joel on double photo therapy to try and bring down the jaundice asap. He then advised to supplement with formula if my milk had not yet come in to help flush out the bilirubin through urine and poop. He also said that if the levels did not drop, he would also like me to stop breastfeeding altogether because breast milk contains certain hormones that cause jaundice. On that matter, I told him that I would think about it. He then concluded our conversation by saying that they would test him again tomorrow morning to see if the levels have come down. 

I agreed to supplement him with formula as I was only producing colostrum at that time. I told the nurses to cup or syringe feed him as I wanted to continue to breast feed. Thank God that I was thought the method of At-Breast Supplementing or tube feeding (I believe most hospitals in KL/Malaysia understand if you say tube feeding) and also how to do hand expression to stimulate my milk production.

I spent most of the day worrying about him and crying so much because I was so worried and I felt so bad that I had waited so long to treat him and his condition had become this bad. According to the doctor, if his levels continue to climb to 20 mg/dL - 25 mg/dL (342 μmol/l - 427 μmol/l)  they would have to put in a drip to help flush out the bilirubin. That afternoon, Dr Hwa our family friend came by with his family to visit and advised us to get his blood test done once again that night to see how he is doing. Later that evening after dinner, I also had a long conversation with Doc sis and she also insisted that we get his blood test done. So feeling determined, I told the nurses calmly that I would like another test to be done since it was already 12 hours since the first test. I wanted to know whether his levels were going up  significantly as we wanted to make some decisions.

We understand that private hospitals in Malaysia do not have the facilities to handle Hyperbilirubinemia if the levels are very high, ie. if Joel need a blood exchange to be done all the private hospitals will transfer the baby to a  government hospital for treatment. So if this was the case, we did not want to waste anymore time and let Joel suffer for no reason. If needed, we would check out immediately the next day and check ourselves into the nearest government hospital to seek treatment.

His test results came back at 17.9 mg/dL (306 μmol/l). It was a relief to know that his levels had not shot up significantly and the probability that it will drop the next day with treatment and supplementation was good. So we decided to wait until his blood test the next morning to determine our next course of action.

We continued to pray together with our family members and cell group for his healing. 

15th February

His blood test results came back at 15.5 mg/dL (265μmol/l) I was praising God that it had come down pretty significantly since the night before. I took a picture of him and look at the difference! He was so much more alert and happy. I also managed to breast feed him somewhat though we had to continue to supplement him with formula so that he will settle down and stay under the photo therapy longer.

16th February 

His blood results came back at 11.9 mg/dL (203 μmol/l) He was indeed getting much better and I was able to pump about 40-60 ml of breast milk for him to drink so we could supplement less with formula. Dr Hoh said that he would only be able to discharge Joel if his levels came down below 10 mg/dL (171 mg/dL) His reasons were the possibility that the level could go back up again as it is only day 4. We thought no harm in staying another day to make sure that he was ok. Chapati left the hospital on day 4 and his jaundice level was188 μmol/l (10.99 mg/dL)

He was able to breastfeed much better and we still supplemented him with some formula to keep him satisfied once again so that he could sleep still under the photo therapy.
17th February

His blood test results came back at 9.6 mg/dL (164 μmol/l) We were so ready to go home! We got our discharge slip, paid the bill and left the hospital at around 2pm!

That's him after a feed. You can see how chubby his cheeks are and how much he has improved. You can hardly see any yellow at all. That's us walking out of the hospital together!

We are so grateful to all our friends and family who prayed for us during this difficult time. We also really thank God for his healing, grace and mercy on our family.

Mummies did your baby have jaundice? What was your experience?

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