Jan 15, 2007 05:05 PM
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After an eventful 9 months when you and your spouse have gone thru many experiences, some as scary as hell most of the time wonderful, your little one after keeping you spellbound for 9 months, gives you a signal “pa take momma to the doc I can’t wait to see you both any more”.
In the middle of the night you drive to the hospital, nervous, as if you are going to deliver the baby. No experience has even been such, no board exams, when you proposed, marriage nothing can even come close to this experience. Would it be an angel or that cute Dennis the menace, will we get the room we “tentatively” booked. Would everything be fine, will parents be able to make it in time as this fellow is early by two weeks.
After a long wait of 15 hours doctors decide to go for a cesarean and things are getting a little difficult now. You are all alone in the hospital, another 30 minutes and you will be with your wife who has just come out of OT, and a baby… your baby. You anxiously wait and go thru toughest 45 minutes of your life. You hear an announcement for the attendant of “patient Deepa”. You are asked to go to NICU. Now by this time you are completely lost, panicked you simply follow what you have been asked to do and make it to the doors of NICU. The known face of gynecologist you have been visiting is of some respite, she congratulate you to have become a father and in those moment of complete “no clue what so ever” you say “same to you”.
Before you could ask to see the baby, a team of very grim looking pediatricians come out and stand beside you, you could sense something wrong and now it is time for your hands and feet to start getting numb. “Is your baby insured?”, “let me tell you it is common and not life threatening”, “you or mother of the baby is not responsible for this”…… Will somebody tell me what has happened. may I know is it a boy or a girl?… now that question managed to shut those doctors up who were bombing me with those questions and consolations. “Ohh so sorry it’s a boy.”
I am told that my son is born with a rare anomaly referred to as Pierre Robin Syndrome. I am also told not to disclose it to the mother till she is out of Postoperative unit. I just realized that I cannot control my tears anymore, I cannot go to her, please leave me alone.What follows for next 24 hours is a nightmare, a series of investigations from bone structure to heart to skin. everything. Much to your relief other anomalies after these tests are getting ruled out one after the other.
Pierre Robin Sequence, also known as "Pierre Robin Malformation Sequence" or "Robin Anomalad", is the name given to the following birth defects if they appear together:
- Small lower jaw(micrognathia), A tongue which tends to ball up at the back of the mouth and fall back towards the throat(glossoptosis), breathing problems, horseshoe-shaped cleft palate may or may not be present. My son was having micrognathia, glossoptosis and cleft palate where the cleft was present in both hard and soft palate.
5 days in hospital were horrible as well as helping at the same time. Since the baby was having a receded lower jaw, he was not able to suckle which barred him from breast-feed. Also, since the roof of the mouth was missing there was nothing between his nose and mouth making it extremely risky to give him any liquid, as the possibility was it may go to his breathing pipe. Doctors and nurses used to call my wife to NICU for every feed where she would express milk and nurse would feed the baby with a Palada. A Palada is nothing but a small bowl with a long bout. All you need to do is put the baby in right posture and pour milk in his mouth placing palada quite deep in the mouth.
After 5 days when doctors was confident that we would be able to feed him without causing any danger to him, they let us go. By than I had met a lot of pediatric and plastic surgeons. It was decided that jaw would catch up with growth of the mouth and when it happens there would be enough room for the tongue, it will also be strong enough to hold itself so it wall not fall back and obstruct his breathing. So no surgical procedure was done at that time and about 10 months of age was decided upon for the surgery to construct his palate.
Initial months for any parents having a baby with PRS would be very tough. One of them will always have to keep an eye on the baby even if he/she is sleeping. You need to ensure that he is always side on so that tongue do not fall back. Feeding is another problem, it requires a lot of patience and perfection during initial weeks. However, god and nature is greater than anything we know. Baby himself would learn how to manage the problems he has and would let you know to trust him more than what you do. There are milk bottles which comes specially for babies having PRS. These are rarely available in India. You can ask any of your friend/relative coming back from abroad(US, all European counties, Japan, Australia) where it is easily available. You can even order online from sites like eBay. However, once your baby is about two months you can use a normal feeding bottle but do make the opening in the nipple a little wider so that milk comes out of it without the need of pressing it.
Babies with PRS have a tendency to catch ear infections as milk travels everywhere without any obstruction. Do keep visiting doctors to ensure everything is going fine. Also, since the baby is born with one congenital defect do not overlook anything. If you think something is abnormal or is not looking fine do talk to Doc. But please, do not get finicky about it. Talk to as less people as possible about it and most important TREAT HIM LIKE A NORMAL CHILD.
PRS babies might take a little longer than an average child to achieve milestones(crawling etc.). Don’t panic, it is understandable; he is only on the liquid diet as against semi solid/solid diet other babies have. You can always start giving him cereals etc. My wife used to boil all seasonal vegetables, daliya, cereals and than sieve and squeeze the pulp to make it a liquid. It is not as nutritious as the pulp but is better than “only” top feed and mother’s milk. You can also start grinding fruits with the milk, which will keep your baby’s taste buds alive while giving him required vitamins.
When a baby develops in mother’s womb left portion and right portions of the mouth are not attached, jaw, lips palate etc. later fuse together. When these are not able to fuse properly, you get a cleft. Usually when cleft is there it starts from the lip, pass through jaw lines and goes till palate, my son is fortunate to have a cleft only in his palate. His lips and jaw lines are intact. With time his lower jaw is showing improvement and doctors say with this rate it should be normal by the time he is 10(please see his pic and let me know if you notice a receded jaw). That left us with only one surgery to be performed to repair his palate.
After a lot of due diligence and consultation we went to Sir Ganga Ram hospital in Delhi for cleft palate surgery(it is a constructive surgery and only a plastic surgeon should do it, I strongly recommend you do not go to a pediatric surgeon). It’s been more than a month since he was operated upon and we are happy with the progress he is making.
Contd. In comments as usual:(
