The day that changed our lives…

April 25th, 2014 is a day my husband and I will never forget. At a routine 20 week growth ultrasound, my little Pumpkin was in a transverse position making it challenging for the doctors to see his heart. After a couple of hours trying to shift positions, drinking some juice and moving, my little Pumpkin did not budge. So we were asked to come again in a few days  – this time around Pumpkin was in a breach position again causing challenges to the doctors to see his heart. So we were asked to go and get Fetal Echocardiagram or fetal echo as those doctors have very powerful ultrasound machines that can see heart structures in spite of little munchkins being in any position… I was getting nervous and something kept bothering me as to why the doctors are after my baby’s heart – is it something that are seeing that would warrant a specialized heart echo.

My heart was racing watching the technician look at our baby’s heart during the fetal echo. We knew the technician could not answer any of our questions but I still tried asking basic questions to see if there were 4 heart chambers. She said nothing and after 3 hours of ultrasound, got the cardiologist in. She then looked at the images further and told us that she saw some abnormality in our little Pumpkin’s heart. At this time, our world came shattering down and I was already holding back my tears. She showed us 2 structural heart diagrams – one of a normal heart and one of our baby’s showing us how his heart was different as it represented itself in the form of Transposition of Greater Arteries (TGA).

Thus began our journey over the many months in an attempt to understand what CHD is and in particular what TGA was. I kept on telling myself that I should still enjoy the process of becoming a mom and eventually when I do become a mom. I ended up creating a simple art piece to remind myself during my entire pregnancy to help me. I must say it gave me all the courage to go through the entire 41 weeks and eventually give birth to our Pumpkin without any drugs.

Something to pay heed and we did not know at that time is that the most basic part of correcting TGA is the Arterial Switch Operation (ASO) in which the the arteries are switched back to the right position. However what makes the surgery complicated and where things can go very wrong as it happened in our case are the coronary arteries. This is because there are millions of configurations of how coronaries may be structured and because they are so tiny, performing the switch impacts these tiny minuscule structures. Further, the exact configuration or anatomy of these coronaries cannot be seen by fetal echo – these are only seen for the first time when the baby’s chest is cut open i.e. at the time of the ASO. Thus, correcting or working the coronaries really depends on the skill, experience and knowledge of the surgeon – one definitely would hope that however rare or complicated this structure is, the surgeon may have seen something similar in one of his previous surgeries and your own baby is not the first. We came to know about this only when our baby’s heart failed and we were readmitted to the ICU once again where he was fighting for his life.

I still struggle often times reconciling why this happened to our baby or why we did not do things differently as I mentioned in my last post. I know that I cannot change the past, my husband tells me that every time I get emotional, its more than 3 months since our baby’s birth but this still gets me. I suppose I may be feeling angry, guilty and even envious of other parents when I see what looks a very normal way of taking care of one’s baby or the fact that our baby was continuously posted for 6-7 hours straight on multiple occasions to get his ART line or just one of the PIC lines. Is it wrong to feel this way when I see other babies? Maybe…

Why this blog, Why Now?

I was asking the same question over the last few weeks…

3 months 3 days to be exact since the birth of my little bundle of joy I call Pumpkin. He was prenatally diagnosed with Transposition of Greater Arteries (TGA), one of the simpler forms of Congenital Heart Defects (CHDs). I will have another post with resources explaining the CHD family of defects however little is unknown atleast when parents are first informed that their unborn or just born baby has CHD that this defect is found 1% of the times and is infact the most common congenital defects today. Most importantly no known causes are known yet and hence prevention or pre-emptive intervention is out of question…

We had researched a lot about our baby’s defect, joined support groups on Facebook, spoke with a number of parents, met with the surgeon, did the tour of cardiac ICU and felt prepared best to our capabilities to face the birth of our baby, his upcoming surgery and recovery fully understanding that it would be a tough 2-3 weeks postpartum. What transpired was nothing that my husband nor I had ever expected or thought about – seeing one’s 6 week baby’s heart failing and some of the so called best doctors not knowing what may have caused this and lack of action by the medical staff made us feel like we were inching closer every second to losing our most precious possession. I say “so called best doctors” because the fist surgery now appears to be a botched surgery full of lies unfortunately… I will have another blog to share what transpired on the uneventful day of October 11th as our little Pumpkin was fighting against all odds…

To this day I wish we had acted differently and I wish we had thought about all the different aspects of bringing home a CHD baby from the hospital – things like breastfeeding, bonding challenges, how to find the best medical care team or how babies return from hospitals traumatized and what we could do to aid in his transition sooner. Our experiences have encouraged me to start blogging on these topics so that families can avoid some of the mistakes we made. I hope to write on and cover topics such as:

• Building a resource and tool-kit for families going through this extremely tough journey
• Create awareness about CHD
• Share our experiences
• Invite other families to share their stories so that we could

What we could do differently?

• Mommy’s gut is always right: Looking back, I’d say go with your gut – if something is troubling you, keep asking questions and dont settle for anything – this was our first mistake. Post his surgery, I always questioned the doctors about the color of our baby’s skin which was borderline pale compared to the lovely fresh complexion at birth, or his heavy breathing, his low haemoglobin, we were always told not to worry as he was recovering from such a big surgery that he would get better with time. This was always unsettling for especially me as I never felt as ease, but thought that doctors know best.

• Go for best pediatric cardiac surgeon and the hospital: I still don’t know why we did not go for Stanford since it was in the same city – Why we settled for a different hospital even though it is considered very good – its still not #8 in the country. Yes my pregnancy care was going on in this hospital but when we came to know our our baby’s diagnosis way back in 22nd week, we should have opted for Stanford.  We were assured by the surgeon at our present hospital that our baby’s TGA anatomy was of a garden variety and he had years of experience so there was nothing to worry about. His sales pitch worked on us unfortunately, maybe because we needed someone to tell us that everything was going to be OK and this was not something that was challenging, I still dont know… When we have Dr Hanley working at Stanford, who is considered one of the best in the world, our search should have ended there… **I am not naming the hospital where I gave birth**

• Numbers are important: Both my husband and I are numbers people, at work we go after results and KPIs or key performance indicators. I have no clue what made us completely overlook this aspect when it came to selecting the hospital where our baby would receive care and have his surgery. I believe some of these stats should be available on American Heart Association or Little Hearts. Some of these numbers or facts could be:
  • # of successful surgeries performed/year for the particular defect
  • frequency of repeat procedures and timing
  • Ranking of the hospital in the country
  • Competency of the particular surgeon

• Cardiologist Visits: It is utmost important that our babies be seen by his/her cardiologist atleast once a week immediately following discharge post surgery. This way if something is amiss or needs proactive care or monitoring, they can be planned and undertaken. Had our baby’s cardiologist seen him before 3 weeks, we believe that the deteriorating function of his heart would most probably have been detected via echos and EKGs – we would not have to arrive to the ER with a baby whose heart had failed. We as parents are the biggest advocates for our babies and if the cardiologist is not available to see our baby, we need to urge the need – if that particular cardiologist is unavailable, perhaps another cardiologist could see our baby…

• Skin to Skin: Yes the overall experience after our baby was born was completely overwhelming. Its easy to fall prey in the “now” and forget about tomorrow when our babies will return home. Our baby’s condition was diagnosed prenatally which meant that everyone at the hospital where I was giving birth would be prepared to take care of our Pumpkin, but that does not mean that being a mom one cannot request that our babies be brought to the breast or ask the medical staff to let us have more skin to skin time with our babies. We simply did not ask for this – when our baby was given the bottle on day 3, I simply stood there seeing our baby eating from the bottle like he was so hungry for days. We should have atleast tried bringing our baby to my breast and then maybe given him the bottle if needed. I should have held our baby by bringing him close to my chest not being fully clothed – no one asked me about it and I did not bring it up either thinking that I would cause more harm to our baby given he had wires and monitors around him… Not encouraging this, post 3 months, I feel I have failed in breastfeeding our baby, he gets mad at the breasts when he loves his pacifier and bottle. Maybe I should have given my finger for sucking and soothing instead of the pacifier at the ICU… My pumpkin and I are still struggling to start breastfeeding and it brings tears every time  we try this… Since breastfeeding is so important for me, I should have had our own lactation support to work with me at the cardiac ICU as mommy-baby separation like we experienced takes a toll in bonding and establishing breastfeeding…

• Holistic Care: Yes our babies are heart babies but nonetheless they are babies. Having been taken away with arms strapped in an ICU room as opposed to being with their moms is probably traumatic for these brave little ones I would imagine. Our baby not only had his arms strapped but was already poked a few times for getting various lines in preparation of balloon septostomy procedure. Plus he only had a diaper on with bare chest. I would think that would make it an extremely frightening experience for a baby that is a few minutes old, forget about the natural instincts where a baby would cuddle with their moms or even crawl to the breasts. So these are examples of some possible therapies depending on what may be needed:
  • Gentle Therapy: Seeing our Pumpkin spend 6.5 weeks between the two ICU visits in his short 9 week life, we began thinking about a few therapies to perhaps ease the trauma he may be facing. Something to consider is craniosacral therapy for babies. Its a very gentle treatment that I have great faith in. We are at present having it done on our little one where our therapist who is also a nurse comes at our home and spends an hour working with our Pumpkin. It definitely helped him with a range of motions – he started going on his side, even tilting on his tummy, started making a lot of coo sounds, even longer ones, much better taking in the bottle, yes I wish we were breastfeeding – more on this in another post..
  • Feeding Therapy: Our Pumpkin came home from his first surgery on a feeding tube or an NG (nasogastric) tube. This was a huge surprise for us because just days prior he was taking in the bottle so well at mere 3 days old. That got us to thinking about what may have happened during surgery. The medical staff assured us that this was a very common occurrence and not going home on an NG tube was rare. However upon talking with a quite a few parents with TGA babies, it became apparent that going home on an NG tube was neither a norm or a chance but perhaps an indication of some nerve damage during surgery or perhaps even vocal chord paresis. This made us really nervous and we wanted more information from our doctors. We are still talking about this happening at the time of the first surgery at the first hospital, and our bub’s cardiologist insisted there was nothing to worry, it could just be some nerve damage and if it was it could heal in 6-8 weeks. if not, then we could look at post 8 weeks. Although we were not satisfied with just doing a wait game and insisted that he be seen by a pediatric ENT specialist, his cardiologist was just not ready to give us a referral. Days and weeks passed when we put our foot down as well on having a referral and finally got one – however 2 days before our bub’s ENT appointment, he ended up being admitted at Stanford. Nonetheless, feeding via an NG tube for 2 months was very shattering – no breastfeeding and not even the bottle. I really did not want our baby on a G-Tube. Thankfully he passed his swallow study for silent aspiration which meant we could give him a bottle – but this was a new skill for our baby so a lot of struggle and a lot of hard work and patience between our baby, my husband and I, we got the NG tube removed and are currently on a bottle. We are also working with a lactation consultant. All this while we were working with a feeding therapist to help our little man transition from NG tube to the bottle – there were things like the technique, pacing the bottle, nipple size, bottles, positions and you name it that we worked on. I will have another post on how we transitioned from the NG tube.

Not a single day goes by when I do not question our decisions leading to this day. I know I cannot change anything from the past and only have now to work on, those feelings of guilt for making our little pumpkin suffer a heart failure, having milk pushed down his stomach with a feeding tube or being poked or prodded unnecessarily at the hospital. I am just hoping that whoever comes across this blog thinks about some of the other aspects that would make it slightly easier for our little ones…