Sasha's Birth Story

One might wonder how much of a birth story a planned C-section has to offer.  This is more of a story of what happened after the birth of our second baby girl, when we found out that she has Down Syndrome.

I’ve been struggling with how to begin talking about this in a public way.  I don’t want to keep anything a secret – Sasha is who she is, and will always be, and there is nothing to hide about that.  But the whole experience has been so overwhelming, confusing, difficult, and is still ongoing… so how do I stop in the middle and start writing or talking, when I’m quite certain that the story still isn’t over, that more and more will need to be written, and that Sasha’s life, and challenges, and triumphs have only just begun. 

We went in for our scheduled C-section on Monday, November 21^st.  The surgery went exactly as planned, although it seemed to take a lot longer than last time – it probably felt this way since last time I was so exhausted from 2 days of no-pain-relief, pitocin-from-hell labor that I fell asleep the minute they gave me the spinal and lay me on the table.  This time I was fully awake and present for the whole experience.  Our little girl was born healthy and crying loudly, at 2:10pm.  Her weight was 7lbs 8oz (a surprise, since Vera was almost a full pound heavier at a week earlier, and I was sure this baby would be even bigger).  In the recovery room, we decided on her name:  Alexandra Mabel Lampe.  The Russian nickname for Alexandra is Sasha.

 

The minute I saw her, though, besides noticing her strong cry, healthy color, and full head of dark hair (again, a total departure from her sister, who was mostly bald through her 1^st birthday), I noticed her eyes.  Right away, I thought: Down Syndrome?  But, I doubted myself – newborns are swollen at birth, right?  Maybe I was expecting a facsimile of Vera so much that anything different looked strange.  Still, in the recovery room with Joe, my parents and his parents, I asked the nurse, “Do you think there’s anything off about the way her eyes look – is this ok?” and she said “all newborn babies have swollen eyes, it’s normal.”  My mother and mother-in-law confirmed.  Later, I admitted to Joe (and even later, to my mom) that I had worried that she looked like she had Down Syndrome.  They both felt that it was nothing, so I moved on.  To be honest, how else could they have answered me?  She was beautiful.  Her eyes looked exotic – slightly upward slanting.  She was pink and healthy.  Also, we had gone through all the screenings for the Trisomy disorders, and had been given relatively low chances of having a baby with Down Syndrome. 

We spent our first day with our newborn – Vera came to visit and totally blew us away with her confident and relaxed manner around the baby… she gave the baby kisses, offered her snacks and juice boxes, didn’t freak out at all to see her mother in a hospital bed with an IV coming out of her arm, and when it was time for her to go home, she gestured to Sasha and said “Come on, baby sister, come on!”  

 

The next day, at about 7am, my OB/surgeon came in to check my incision and go over the surgery with me.  After that he said, “I heard from the nurse that they’re questioning that the baby may have Down Syndrome?”  I think he could tell immediately from our reaction that we had not heard about this, because he said “Has anyone talked to you about this?”  We said no.  He said “Let me take a look at her right now,” and quickly looked Sasha over – first her face and eyes, then the palms of her hands, the bottoms of her feet, and the back of her neck.  He calmly and sensitively explained that he had found several markers for DS, and that he felt that further testing was warranted.  When we asked, “but your sense right now is that she does have it?” He said, “Yes.”

We were totally devastated.  The OB sat with us for a while, as we cried and asked him some questions.  Then he said he would page our pediatrician.  The next couple hours were excruciating.  We were waiting for our pediatrician.  No one had alerted them (or us) to the fact that this diagnosis was being considered (an oversight that we later found out was being investigated by the powers-that-be at the hospital – major SNAFU).  Finally the pediatrician arrived and confirmed the suspected diagnosis, adding that a consultation from genetics, cardiology, and a renal ultrasound would also be in order.  Our parents arrived later that day to hear the news and help us cope.  That day was a total blur of emotions.  We spent most of the day crying, and I spent a significant amount of time trying to convince myself that this was a bad dream, and that I would wake up.  Later that day, the geneticist also confirmed the diagnosis, pending bloodwork that wouldn’t come back for a week – but he said there was no doubt in his mind. 

Late Tuesday night, the nurses reported that Sasha was developing Jaundice, and would need to spend 3 hours at a time in the nursery receiving phototherapy, with ½ hour breaks to come back to my room to nurse.  For any of you who have nursed a newborn, you know that you can spend the better part of ½ an hour just getting them to wake up and latch properly.  Most times, when they came in to take her back to the nursery, she had only been latched for 5 minutes.  Not nearly enough time… but the nurses said “don’t worry, we’ll just give her formula in the nursery” – for a devoted nursing mom, this is not an acceptable option.  I was so upset.  Finally on Wednesday, our pediatrician intervened and convinced the nurses to move the lightbox into our room (that had been an option all along?!) and found us something called a “billy blanket” that was basically a “blanket” of lights that Sasha could be wrapped in, so that she could continue getting phototherapy while I held her or nursed her (again, why did no one else think of this?!).  [Side note: our regular pediatrician was not on hospital duty that week, a partner of hers was.  But, even though she was not on duty and in fact on vacation that week, she came to sit with us for 3 hours on Wednesday and another hour before heading to her Thanksgiving dinner on Thursday.  She was so supportive and helpful, and we will never forget it]. 

But, as soon as the Jaundice problem was solved, another came up.  The cardiology exam (ultrasound of her heart) revealed that she does not have the major congenital heart defects associated with Down Syndrome (phew), but that she does have two small heart defects (Patent Ductus Arteriosus or “PDA”, and an Atrial Septal Defect).  Both of these are basically small openings in the heart that are necessary for a fetus, but usually close either right before or right after birth.  They can stay open sometimes in any baby, not just because of DS, and they usually end up closing on their own, or can be corrected surgically at a later date as long as they don’t cause problems with the baby’s ability to thrive and gain weight.  However, because of these defects, the Cardiologists could not rule out another, more serious defect (“Coarctation of the Aorta”) and therefore they insisted that she be transferred to the Neonatal Intensive Care Unit (NICU) for monitoring.  Between the Phototherapy in the nursery and now being moved to the NICU (which was on a different floor), we seemed to be in a process of having our daughter taken further and further away.  It was terrible.

The NICU was like another world.  They had her hooked up to heart, respiration, and blood oxygen monitors.  She wasn’t dressed or swaddled, and as a result she was flailing around and scratched her face terribly. 

 

Every time I needed to nurse her, we had to sign out at the front desk of the Maternity ward (because techinically the NICU was part of another hospital - Conn. Children's Medical Center), walk down the hall to the elevator, go down one floor, and then walk around the corner to the NICU, sign in, scrub up, and disconnect her from her monitors (all of this with me at 2 days post-op).  Then they made us weigh her before and after every meal.  They gave her countless heel-sticks (blood tests from her heel) to check her glucose level.  They were basically breathing down our necks constantly because they felt she wasn’t getting enough to eat for a baby her size… It was so frustrating for me because I felt that they couldn’t seem to wrap their brains around the fact that this was not a “sick” baby.  She was full-term newborn who was having a little trouble learning to nurse, like any other newborn.  They would freak out at any little thing – she was going through what all newborns go through, except under a spotlight.  Joe and I are fairly confident parents, but this really shook our ability to follow our instincts.  The last straw came when I arrived at 3am for a feeding and they said “well, she probably isn’t hungry” and I asked “why not? It’s been 3 hrs since I fed her” and they said “well, we stuck her heel for a glucose level, and it was low, so we fed her.”  I was furious (granted, they fed her my breast milk which I had pumped earlier, but still).  When I asked the nurse why they didn’t call me to come feed her, she said “We thought it would be easier to just feed her – we didn’t want you to have to go through the trouble of having us wake you up to come down here.”  After I thoroughly ripped into her and the doctor for interfering with her breastfeeding and explained to her that midnight feedings are, in fact, what I signed up for AS A MOTHER for god’s sake, I insisted that they write on her chart (and any other place possible) that I MUST be notified for any feedings.  The next nurse was much better, and decided to put Sasha in clothes, swaddle her, and put her in a regular bed and not an incubator because, after all (in her words) “this is not a sick baby.” Finally I attended “rounds” with her doctors the next morning and express my dissatisfaction with the way they were treating her and us.  They heard me, and changed her care immediately.  They took off some of the (nonessential) monitors, reduced the heel sticks, and stopped making us weigh her constantly, so that her care would be a little more consistent with what she would be getting upstairs in the regular nursery.  After a few visits from one of the NICU lactation consultants (one of the best I’ve worked with), we got Sasha nursing successfully, and we all breathed a sigh of relief.  She still needed a supplemental bottle of expressed milk *after* nursing (to make sure she was getting enough; her endurance for feeds was kind of short), but at least we knew that breastfeeding was the first priority (and I’m happy to report she is now breastfeeding exclusively, no more need for bottles).  So, we spent Thursday and Friday in 3-4 hour intervals, back and forth to the NICU for feedings, trying to make sense of what was going on, and trying to keep it together.

On Friday I was discharged (by the way, through all this, my C-section recovery had been miraculously easy), but they had to keep Sasha for one more day in the NICU so that the cardiologists could repeat her tests and sign off on sending her home.  That finally happened on Saturday morning, and we brought her home.  What a relief.  She continued to do well with nursing, and by Monday, she was back up to her birth weight. 

At this point, we’ve had a bit of a roller coaster getting her to gain weight.  We had a 3 week period where she didn’t gain any weight, and the doctors were starting to make noises about heart surgery.  Her defects are still open, they haven’t closed on their own yet, and because her heart pumps less efficiently, her whole body has to work a little harder to stay pink and healthy, and therefore she burns more calories.  But, with a few extra feedings in her day, she now seems to be back on track.  The cardiologist is still optimistic that the Atrial Septal Defect will still close on its own (instead of needing open heart surgery to correct), and although the PDA is still open, that surgery is much less invasive (it’s done with a catheter placed through the femoral artery in the leg).  She is currently just over 9 lbs, and hopefully the upward trend will continue.

Her pediatricians are impressed with her progress, and feel that her muscle tone is very good (often a big issue with DS).  They’re keeping a close eye on her, though, because there are complications that could still pop up.  Of course, she will have lifelong challenges – some foreseeable and some not.  We are of course happy that so far she has dodged some of the major health concerns (major heart defects, renal issues, low muscle tone, etc), but we are still mourning the loss of the child we expected to have, and coming to terms with this new reality.  Sasha is a beautiful, peaceful and charming child, but there is so much about her (and our) future that is uncertain and frightening.  We struggle with how to talk to friends and family about her issues, and are learning how to deal with people’s response to her condition (some helpful, some not so much).  Vera continues to be the best big sister we could ever imagine… she has no jealousy; she is affectionate, inquisitive, protective, gentle, and attentive.  She cuddles with me and Sasha when we’re nursing.  She brings Sasha a hat or a blanket and says “baby sister has to be warm.”  She gives Sasha kisses and says "love you, love you Baby."  It is so sweet.

So, that is the story of Sasha’s birth.  Not what we expected, and still an ongoing struggle.  Although we know a certain amount, we still have a lot to learn about what affect DS will have on Sasha (and we are not quite strong enough yet to start reading all the materials that were given to us), but at least we know there is a lot of support out there for children with this diagnosis.  As a Birth-to-Three provider, I feel I have something extra to offer her, which is good, but I still feel lost sometimes.  We will also have to wait and see what effect DS has on us as her parents and as partners, and on Vera as her big sister.  I can only hope and believe that we will find strength and joy together.

PS: Of course, there are many pictures of the time between her birth and now (she is almost 7 weeks old), and I don't know if I'll have time or energy to catch up on all of those, but here is a picture taken of her on New Years Day.