We are ‘Cleft Strong’

This page is a summation of our very intimate and special journey with our second baby.

Barring a couple of resources on Cleft lip and Palate, I found there to be a general lack of first hand information and support in India for parents going through this with their babies. The general attitude dished out to us was, let the baby come and we will see and put you through to the right people. Unfortunately, this did not inspire enough confidence in us. Truth be told, we wanted to be prepared. Prepared and armed to face the future so that we could be strong for our baby. So when the time came, we could focus ALL of our energies on only loving and taking care of her instead of struggling with resources.

Therefore, in hope of reaching out to parents who might be in the same situation as us, I decided to have a small compilation of our journey from the day we found out to the day we had our little Tara, adding in a list of all the information on support groups, medical practitioners, wellness coaches etc. we got our strength from, because I certainly wish that when we found out, there was a local resource which could comfort me in some way.

Thank you for reading and being a part of this with us.

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Our Journey so far

We were expecting our second child. What could have been more beautiful than being blessed with baby number two? Though, soon our lives were about to change. Change for the better I’ll say now, however at the time everything else around us just stood still.

We found out in my third month of pregnancy that we were going to be blessed with a cleft affected baby. We had it real tough the first week. There were constant break downs and questions since naturally the situation did not sync with our idea of the perfect baby we had hoped for. I wish someone had told me then what I know now, Oh! I do have a perfect baby and I wouldn’t trade her wide smile for anything else in the world.

After the first tough week of emotional release it was time to act, time to get our resources together and also to educate ourselves thoroughly on the condition. I wanted to take charge of my emotional wellbeing and my pregnancy so that I could connect with my little angel in-utero and give her the best I could before she had to fend for herself in the world outside.

The Birth:

My first step was figuring out a way to have an absolutely natural un-medicated birth of my baby. The aim was to have this so that my milk supply would kick in easily and naturally and I’d waste no time in postpartum recovery, something that I wanted considering we were expecting feeding issues with this one. I alone wanted to be able to provide for my baby no matter what the challenge. With the help of a great supportive team of gynaecologist and midwives, we had a water birth that facilitated both.

I also opted for hypno-birth, it helped me cope with our situation and stay absolutely positive through the next two trimesters. We recorded positive affirmations for our baby which helped me connect with her and re-assure her that no matter what we’d all deal with this with utmost resilience.

Feeding:

I did not want to waste any time in struggling with providing the baby with nutrition so we had a really supportive lactation consultant on board to help me with antenatal colostrum banking. That way I could focus on latching the baby to the breast and just give her skin to skin time and know that I had a top up ready if required.

My extremely generous best friends who had just delivered also pitched in with back up milk supply for the baby. It’s because of their phenomenal support I could get past the first few days without a worry and just concentrate on bonding with my bub.

We also ordered some speciality feeding bottles which are specifically meant for babies with feeding difficulties. These were a boon and made my baby feed like a little champ. (Link to the products on the resources page)

Our Team:

After a lot of research and some dark days, we finally found our brilliant cleft surgeon and his amazing team who provided us with all the information we needed with patience, answered all our questions and inspired the confidence in us, reassuring us that we and our baby were going to be in good hands.

Our Support System:

We are so grateful that we had unconditional support from our family and friends. Family that stood by us at every moment. Friends who had researched with us and were kind enough to share their findings, some who shared our tears and our laughter, some who helped me heal and be strong for my baby. There were also several wonderful cleft mum support groups on Facebook which helped me with answers only mums would’ve known.

A big thank you to my dear friends Shweta and Suzan for helping me with breast milk banking when you had your own babies to feed, Swara for being ever so generous and doing gorgeous photography with both my babies and Amrita for just unconditionally being there for me no matter the time.

I will never forget you guys!

Today:

The moment we had our precious little Tara our worries just melted away, her gorgeous little face made the ‘fear’ of the unknown just disappear and replace it with ‘hope’. I know the journey is going to be long and sometimes tough, but I really believe that we’re all truly  taken care of. She’s in great hands and already has an amazing head start.

Resources:

I am dedicating a separate page for all the people and resources who were behind us, supporting us all along in making sure we had a memorable pregnancy, birth and post birth care for our child.

Please visit the page ‘Cleft- Support Resources, Mumbai’ for all contact details.

Thank you again for reading and being a part of our journey!

 

 

 

10 thoughts on “We are ‘Cleft Strong’

  1. Dear Nameeta and Rajiv,

    I’m lost for words. Am proud to be related to you. Thank you for sharing your experience so beautifully.

    With love,

    Jayashankar

  2. That was so beautiful nameeta. I am sure your journey would be an inspiration to a lot of patents with or without baby challenges. Congratulations to you for your beautiful Tara

  3. Dear Nameeta, your mother in law , my friend Gayathri, never stops gushing about the wonderful woman she has as her daughter in law, Someone she sees as a daughter, she is extremely proud of..She feels she has a lot to learn from you, and by sharing your experience we are all getting to learn a lot from you too. Not only is Tara blessed to come into your caring and loving family, but you and your family are truly blessed with this beautiful baby who has given you the strength and spirit which you never knew you had. .
    Thank you so much Nameeta for sharing your journey. The love just flows out of you in your writing and I am truly moved!
    With love and blessings,,
    Rupa Aunty

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