A Mother's Guide on Taking Care of Children With Bronchopulmonary Dysplasia
I was conceived at the age of 29 with medical conditions of multiple intra-uterine fibroids with the largest measuring 9 cm which eventually grew up to 11 cm in the course of pregnancy. The doctors had stated it as a high risk pregnancy. I delivered by 31 weeks and 3 days under emergency C-section as my amniotic fluid had dried up. My baby was in ventilation for 5 days, and after a prolonged battling with life, she acquired a rare disorder called Bronchopulmonary Dysplasia or BPD. In short, Bronchopulmonary Dysplasia is a rare lung disorder that mainly affects low weight neonates born too early or before 32 weeks. In such cases their lungs are not fully grown and might need additional oxygen through mechanical ventilation. This helps the baby breathe easily but this force pumping of the lungs often damages the air sacs in the lungs which causes them to acquire BPD. Infants with BPD acquire an additional oxygen dependency.
It was a tough moment for us to see our baby, who weighed 1.275 kg at birth, in oxygen 24 hours. During this phase, along with the doctors, we also wanted to contact other parents whose child had BPD issues to know about their experiences. We searched for numerous online articles regarding this but they were full of medical terminologies and jargons which were beyond our grasp. So I decided to write this article primarily for the parents from a mother’s experience. I have tried to keep it basic and within the understanding level.
Post-delivery, I was admitted in NICU for 80 days because of the baby’s low birth weight and oxygen dependency. I also realized a couple of things during the prolonged hospital stay. There were platoons of preterm deliveries taking place as early as 29 weeks. Almost all the NICU cribs were full and every week there was a new baby. But none however acquired BPD. Primarily because the mothers had time to be injected with two doses of steroid which I could not be given due to emergency. The basic purpose of steroids is to prompt the fast growth of all the organs in the fetus. The lungs are the last organ to develop and it develops by the end of 32 weeks. My baby was born with 15% lung growth. When she was diagnosed with BPD, initially she was in HFNC and then when the doctor checked that she needed a minimum oxygen requirement, they discharged us with oxygen concentrator therapy.
Usually the concentrator can be taken on rent, and many hospitals charge near about Rs.5000 a month in Bangalore. However the rent depends on the concentrator quality. Along with the concentrator we also had to take a backup inverter connection and a portable oxygen cylinder at home. It may be noted that the oxygen concentrator machine consumes a lot of electricity, hence be prepared for a skyrocketing electricity bill. Once everything was set, we were ready for discharge. After we brought her home, everything was our responsibility. The 80 days I had spent in hospital was a sort of training for me to take care of the child, hence I was trained in everything, from inserting a tube for feeding to checking if the tube had reached the stomach through a syringe and stethoscope, adjusting the concentrator and helping out through.
Aspiration, everything was taught by the experienced nurses. But certainly it was not an easy task to take care of a baby who is 24 hours in oxygen through a nasal cannula.
The most important precaution which I maintained was the cleaning of the baby. Since babies with BPD have immature lungs and low immune systems, it is very important that they cannot be taken care of like other regular babies. Hence curtailing regular bath is essential. The best thing to do is a regular sponging with lukewarm water, cleaning through the neck line, back of the ears, armpits and vitals. Also avoid talcum powder, room freshener or any forms of spray in front of the baby which might aggravate the condition. Next should follow the massage therapy. Massaging the baby is very important as this will not only enable the baby’s growth but also help in developing the lungs. The chest should be gently massaged with your palms as if making the shape of a heart. I am not focusing much on the other aspects of massage since I am writing primarily about BPD. Another effective thing I followed was oil clean up. Whenever the baby throws up, the best thing to do is apply ample oil in the body where the dirt remains and gently rub off with a soft towel. This prevents the use of much water. Another important thing is to make sure that the baby does not catch a cold. Due to immature lungs, these babies catch cold much more easily than the other babies. I had to keep the fan at low speed in the sultry April summer since it made my daughter breathe fast. Therefore ensure to cloth her enough for the weather, keeping the chest and neck area covered as much as possible.
Nutrition is one of the foremost important things for babies with BPD. Such babies have growth retardation and do not gain weight easily. The weight of the baby has a significant role to play in weaning off the oxygen. As her body grows, so does her lungs. Also these babies develop Gastroesophageal reflux disorder (GERD). It is a sort of acid reflux where the stomach acid frequently flows back into the tube connecting the mouth and stomach. As a result the babies suffer from severe vomiting. They may throw up partial or the entire feed. Breastfeeding is certainly the best option, but otherwise they are fed through a feeding tube that is orally inserted to reach the stomach. To test if it has reached the stomach, we can take a 2 ml syringe, put it in the mouth of the tube and try to pull in. If food particles come out, that means it has reached the stomach, and it is safe to give the milk. The milk is taken in a syringe and allowed to flow through the tube without pushing. When my daughter turned 4 months old, her senses were getting active and she started to feel irritated at the tube insertion. The doctor then recommended switching to bottle feed or bowl and spoon. Since my daughter had severe reflux issues, she was prescribed antiemetic oral drops, which curbed the vomiting to a large extent. Also most of the formula milk has 670 kcal per liter; hence I was advised to choose a formula which has 1000 kcal to promote growth and development of the baby.
Now this is one thing that sticks to her skin all the time. A few things are to be kept in mind while using the cannula. My daughter developed skin rashes from the cannula. Also I noticed many black heads in those areas of her face wherever the cannula touched. Their skin is soft and hence rash prone. There are many ways of putting the cannula but the most effective way that worked for me was inserting the prongs and bringing the pipe in the front from the back of the ears and tie underneath the chin with the fastening. I found a few medical articles that said that this process is not very good for babies, so instead of bringing it from behind the ears, I tied it underneath the chin by making a heart shape turn from the cheekbone area.
Fixing the cannula is very important as the baby might attempt to remove that irritable thing from her nose. I tried multiple stickers but the one I found most effective was Med-Stretch. This is basically used for burns. This sticker comes off easily and is not harsh in the baby’s skin. Micro pores are sticky, so they add to the skin rashes. The stickers have to be removed every ten to twelve hours, the skin has to be cleaned and given some free time. During this time you can monitor the baby if she is removing the cannula. Also the cannula should be changed every month. Initially they are soft but as air passes through them, they tend to become stiff and brittle. There was an instance when I felt that my baby’s oxygen requirement had suddenly gone up, and I kept increasing the regulator knob from 0 .25 to 0.50 and then 1. We were very worried as suddenly the baby’s oxygen requirement had increased, but luckily we noticed that the pipe was leaking. This happened because the cannula had become hard and hence it acquired cracks.
We tried our hands on several SPO2 measuring devices. We tried the SPO2 monitor which can be rented at 3000-5000, depending on the machine, however it was not very comfortable. We also bought a SPO2 wristband which was a total waste of money. The best thing is to get a small pediatric pulse oximeter ; however we could not find a pediatric pulse oximeter, so we got the adult one and put it on her foot thumb.
Her SPO2 count would come different for both the feet, with a considerable difference of 4-5 counts. We spoke to the doctor regarding this but he said there is nothing to worry as long as one foot is able to maintain 90. We would check her SPO2 in a span of four to five hours, however in sleep the SPO2 tends to go down since the body is in complete relaxation. Another thing to monitor is the baby’s breathing pattern. Check if the baby is having retraction. Retraction, as your doctor will explain you, is the pulling in of the skin with each breathe through the ribs and collar bones. This hints that the baby is making a lot of effort to get the required oxygen, hence increasing the oxygen level. Nasal flaring is another thing to be checked, where the nostrils widen while breathing in, and making wheezing sounds. These are red signals that you should talk to your doctor immediately.
We were advised to give her Diuretics (a medicinal drug that has to be pre ordered since it is made in the laboratory).Only specific medical shops make them. Along with Diuretics, Potassium and Sodium had to be given. The other medicines were the regular iron, multivitamin and calcium. Babies with BPD often have a wheezing sound while breathing, so we were prescribed to use nasal drops. If the problem persisted, we had to nebulize her. The proper way to make the nebulization solution is to mix 2 ml saline solution to 3 ml of the Levosalbutamol ampule. So total it should come up to 5 ml. Vitamin A is very essential for lung development of the baby, so check for the vitamin contents in the pack of the supplements and try to choose the one that has maximum vitamin A.
There is no set pattern regarding the time taken to wean off the oxygen dependency. Every baby takes different times. For my daughter, it took her 6 months. The doctor told us to keep checking her requirement. We should keep the oxygen flow to a minimum where she can maintain SPO2 of 89-92. So from 0.5 we reduced to 0.25, then 0.15 and so on. When we realized the knob is in the minimum and it cannot go below that, we started the weaning process. We were told to remove the cannula every four hours and check how long she can maintain the SPO2 above 90. As soon as it went below 89, we could put back the cannula. Sometimes her SPO2 dropped to 89, 88 and then again rose up to 92. It would often fluctuate so we had to closely monitor. When we would see that the SPO2 is not rising anymore, we would put back the cannula.
Initially she could maintain SPO2 for 10 minutes, then 15, then half an hour. This way her time span gradually increased from two hours to six hours. I had to remain awake most of the nights monitoring her SPO2 . Then she began to maintain SPO2 while awake, but once asleep, it would gradually begin to fall. This way we kept monitoring, and finally one day she was able to maintain SPO2 for 24 hours. Even after that we kept checking her SPO2 to ensure. For the next four months her SPO2 would remain 94-95 while awake and 89-94 while asleep. When she became of ten months (corrected age), her x-ray report showed much progress in her lung development. She could maintain SPO2 of 94-98 while awake and 92-95 while asleep. Normally if the SPO2 falls below 95 for children, they might fall ill. Babies with BPD however develop a resistance towards low SPO2 and their lungs perform perfectly well even below 95.
GROWTH AND DEVELOPMENT
There is a tendency for these babies towards delayed growth and development. Also the weight gain is hindered. Due to acute vomiting and GERD, she throws up most of her feeds. Her digestion is also very poor. Almost all the vital activities were late for my daughter; she started crawling by 9 months. At present she is 12 months (corrected age), and she can stand with support. She has just started teething. The last time we visited the doctor, she was diagnosed with mild developmental delay. Therefore a few sessions of Occupational therapy was suggested which helped a lot.
WHAT CAN YOU DO AS A MOTHER?
The first thing you need as a mother is abundant patience. Patience is the key to control the upheaval of your maternal emotions. It took approximately six months for my daughter to completely come out of oxygen dependency. Remember you might be already battling with postpartum depression, and seeing your child in oxygen will only add to your profound woes. Let nothing bother you, no tongue wagging at you disturb your mental peace and question your motherhood. I remembered how every morning when the other mothers in NICU would breastfeed their child, carry them in their arms singing lullabies, I could only stand and stare at the crib while adjusting the cannula, monitoring the oxygen and her breathing pattern. It felt miserable as a mother since my child was immobile, attached up with tubes and wires. There was an SPO2 probe tied at her feet, a feeding tube inserted in her mouth and the oxygen cannula in her nose. I could never have a proper newborn picture of my baby without the attachments. We could not move her beyond the bed. It felt miserable but I had to remain positive.
Keep monitoring her SPO2 from time to time, it might take a few months but remember eventually your baby will be out of it. Another thing to keep in mind is that you need to be constantly in touch with your doctor, consult your doctor for every query no matter how lame your query is, yet it is better to consult someone who is an expert. Don’t take every suggestion of the elderly family members regarding child rearing as their experience barely counts in your case. They had raised regular children whose caring process largely differs. Also every child is different and every mother understands her child’s pattern better than the rest. I remember my mother in law telling me to give a regular bath to my baby who was still under oxygen, which resulted in her falling sick as her resistance was very low. The doctor advised me to do regular sponging. Consult the doctor without any hesitation because the slightest mistake can cause a lot of harm. And above everything there is god, prayers surely are answered.
Rianka Sarkar is a Bangalore based professor and an author. A plant lover and a bibliophile, she actively blogs on various parenting forums to help out other mothers. Connect with her on https://www.facebook.com/rianka.sarkar.9/ or https://www.instagram.com/sarkarrianka/
Disclaimer: The opinions expressed in this post are the personal views of the author. They do not necessarily reflect the views of The Mom Store.