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Submitted by PatientsEngage on 4 July 2019
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Jassu Sekhon. 40 from Mumbai delivered a pre-term baby of 1.1Kg at 30 weeks. She shares her experience of what her baby had to go through and what she as a mother did to make her prematurely born baby stronger.

Please tell us about your delivery and birth of your baby?

I delivered my baby 2.5 years ago via caesarean section in a room full of doctors, with my partner by my side and listening to FM radio. Our daughter was pulled out and handed to me. One of the doctors pulled down the green screen that was on my stomach so that I could see the baby come out. It all happened rather quickly and once the baby was taken away (I think to be cleaned and packed) it seemed like ages before the Gynaecologist packed me up!

When did you find out that you were going into early labor? Any warnings during pregnancy?

Because of heavy spotting and bleeding in initial months, I was put on complete bed rest for first trimester. The second trimester was also a lot of restrictions.  After my 20 week checkup, I resumed a normal routine of going in to work and moving about in the house. After the 24th week my feet started to swell up and I started to be breathless and uneasy. One morning the discomfort was a lot and I had been reading up on preeclampsia. Although the doctor had asked me not to worry and all was good, I went in to the closest nursing home for a urine and BP test. The BP was high and there was protein detected in the urine. I called up my Gynaecologist and was advised to come in immediately so that they could monitor my urine and BP better in the hospital. I got admitted on a Saturday afternoon and by Sunday afternoon it was confirmed that they will have to deliver the baby. Besides high BP the doctors also realized that the baby was grossly underweight at 1.2kg (30 wks). I delivered my baby the following Tuesday morning.

Please describe your experience of managing your prematurely born baby.

The first couple of weeks were the most life changing for me. The doctors advised rest. I did rest, only to make certain that I could pump enough milk for my baby. Drinking litres and litres of water and eating a balanced diet helped. Once we brought the baby home, we were advised to keep the space visitor free and install an air filter. The rest of the routine was similar to a newborn’s with feed on demand and sleep pattern.

What are the risks/complications associated with premature birth for mother and child? 

I don’t recall any doctor or nurse sharing any details with regards to risks/ complications to my health. The night before the delivery, both the gynaec and the neonatologist spent time in explaining what we could expect in terms of baby.

The doctors had decided to administer two steroid injections to develop the baby’s lungs. Our daughter was born with healthy lungs and didn’t develop any complications. Though she weighed a mighty 1.1kgs, the neonatologist decided to place her in SCBU (Special care baby unit) and not in NICU.

Does your child have any complications from premature birth?

None.

What was your course of treatment/care for your baby?

Our daughter was in SCBU for 3 weeks. She was fed through a pipe in the nose. She did develop the usual jaundice but it was all under control. The major challenge was weight and it was a slow and steady battle. The neonatologist sat me down and made me understand how important it was to keep myself above this. He reminded me how the mind controls everything and I had to make sure that I could express milk and hand over to the SCBU nurses. Even though the baby was too weak to suckle and would take 10-15 ml expressed milk. Each feed made her stronger and healthier.

She had her eye tests done regularly to rule out retinopathy of prematurity (ROP). We also had two rounds of ear tests. With each test we felt more grateful that she was a healthy baby.

What kind of specialists did you have to consult and for how long?

Eye tests carried on till three months. We had one round of ear tests when the baby was 3 months and another round when she was 8 months to rule out any complications.

Have you learnt anything in managing it all that you wish you knew before?

I have always wondered if I should have been advised or allowed to be more active during my pregnancy.

What added precautions or care did you take or continue to do so?

As advised by pediatrician, my premature baby was completely on breast milk either direct or expressed (initially). I was reminded by the doctors and my family to remain positive throughout the time that our daughter was in the hospital. Being positive and active helped me feel normal and made it possible to give all the care and milk that my baby needed. Initially she was fed through the nose and then with a steel spoon. But she lapped it all up and that helped me get going. After three weeks in SCBU we brought her home to a room which was kept clean and was full of sun and light. We were also advised to limit her contact with visitors for the first couple of months. She was brought home at 1.2 kgs and it took another 3 months to bring her up to 2.2 kgs where she started to look and feel and move like a new born at full term.

I breastfed till Sara was 2 yrs 5 mnths. It was a wonderful experience. The Neonatologist had advised me to completely breastfeed till she turned 8 months. Her Pediatrician also advised the same. After she turned 8 months we started her on baby food. We did start curd after she turned 6 months. She did not take any external milk till she was breastfeeding.

My baby was put on Iron supplement for the first year.

How did you mentally/emotionally cope?

It all went by in a blur. From being admitted for observation to delivering a premature baby to SCBU duty and finally bringing her home. Post my discharge after 4 days from the hospital, I would land up in SCBU at 5:30am with a couple of bottles of expressed milk in an insulated bag. I would stay there till 8 in the evening expressing every couple of hours. Also post two weeks, the nurses encouraged and helped with direct breast feeding. All through the SCBU time, I insisted on doing a lot of Kangaroo Care, something that I had read about and advised by some mothers with similar experience. Unfortunately, the hospital wasn’t very forthcoming for this and very soon I was labelled a pest by the SCBU nurses. But obviously I didn’t care and went head on. I started to spoon feed my baby at all feed times (something that the nurses do mostly). Luckily this was encouraged as the nurses were quite overworked.

Did you see a counselor for support? 

Once during a sit down with the Neonatologist, I happened to mention that the warming lamp malfunctioned a couple of times in SCBU and that if this could harm the baby. He looked at me, shrugged his shoulders and quite agitatedly said- “The worst thing that could have happened to your baby was you dropping her at 30 weeks”. The practical person in me attributed it to be just an irritated reply of a doctor to a patient. But it killed me on the inside. It did make me jittery for a couple of days and I went to a counselor. That really helped as she broke it down for us in terms of where I was physically, emotionally and hormonally.

How have your family and friends supported you? 

I was surrounded by close friends and immediate family who came in from all over. The biggest support hands down was my partner and my mother who moved in with us for 6 months.

My friends were also very very supportive. In fact I got calls from old long lost friends who had similar experiences and they shared their journeys.

What were some of the challenges you faced and what is your advice to patients who face similar challenges?

Having a very low weight premature baby can be very overwhelming. The first time I walked into SCBU, I walked past my newborn’s station as I couldn’t imagine her to be a tiny and weak looking thing. With each passing day they grow stronger and that makes you stronger. Even if the baby is in NICU or SCBU, the mother needs to be strong, well rested and positive. The mother needs unconditional support from her partner and close aides. The doctors and nurses know it best and their advice should be followed to the T.

What keeps you awake at night?

Nothing except that now I have to wake up real early to have my daughter ready for Kindergarten.