Sarah-Hope's first week at home

Sarah-Hope's first week at home   has been absolutely hilarious... she is just surviving being parented by   us.

First night…Rich on duty for the   midnight feed which usually gets started at around 11.30pm... Comes to bed at   2am!

Leigh: "Rich, what have you been   doing?!"

Rich: "Changing her nappy….I   haven't got this parenting thing down yet…it actually took 1.5 hours, 3   nappies and about a kilogram of cotton wool!"

We've had a couple of trips to   NICU at night for help with the feeding tube, making sure it stays in its   place as we wouldn't want to be throwing milk down into her lung!   This can be a bit of a nuisance... but, on the other hand, we   are VERY grateful for it as it gives us the advantage of getting food   into her even when she's sleeping / exhausted from drinking from the bottle   for few minutes. Also, we don't have to fight to get her medication into   her... we can just 'drop it down the tube'. Of course, this should be done in   accordance with the medicine schedule that we were given when we were   discharged from the hospital.

Rich: "Hi, this is Richard,   Sarah-Hope's dad... yes; it’s going very well at home... oh the only thing is   that we didn't give Sarah-Hope her medication at 3pm... or at 6pm. Can we just   add them to her 9pm meds and put it all down her tube now?" When we left NICU,   we recorded the staff on video saying "call us any time of the day if you need   anything, have any questions...” I don't think they expected to hear from us   as much as they have! But great to have nurses we can call 24 hours a   day.

We've been quite busy organising   our space for the new addition to our lives. You know a father's love for   his daughter when, in an instant, he's prepared to give up   his "man-cave" for her. And it doesn't stop there. One of the things we   learnt from the nurses at NICU was creating a nest for your baby, which they   do with rolled up towels covered with receiving blankets. Rich has taken this   on... building nests for Sarah-Hope in the moses basket, the papoose, the car   seat etc to ensure her ultimate comfort and support. I had to really put my   foot down when I saw Rich putting our best bath towels into Sarah-Hope's   nests! The next day, I couldn't figure out why I only had about 2 towelling   nappies (when I thought we had about 15?). You guessed it - all her nappies   were being used as nesting material. So towelling nappy donations are very   welcome, we still need plenty!

Thanks for my very first nest at home, Dad

Sarah-Hope’s first Christmas stocking thanks to Granny Christmas

Cuddle time

Caught napping

Bonding with mom

Update letter - Sarah-Hope is home for Christmas!

Dear friends and family

We trust this email finds you well?

We never imagined that we'd be celebrating Christmas this year at home with our daughter but we had the absolute joy of bringing her home yesterday!

We had an amazing hospital experience and received such compassionate care. Since we didn't prepare to bring a baby home, it's been quite helpful having a couple of weeks to learn about changing nappies and bathing babies with 24 hour nursing support right there... and get our heads around the fact that OH MY, WE ARE ACTUALLY PARENTS!

Up until now, Sarah-Hope was in the neonatal intensive care unit where she was monitored and assessed in order to get a better overall picture of her health. The most significant features at this stage are:

1. The small size of her lungs, which manage to maintain oxygen saturation beautifully but have to work about 2.5 times as hard as a typical newborn. This diminishes the energy she has left for other activities such as feeding (she has a feeding tube as a result). Also, a chest infection at this stage is a serious risk for her.

2. A very low blood platelet count which means she bruises easily and could be at risk of spontaneous bleeding or at worst haemorrhaging.

The good news is that her lungs will grow as she does and her platelets can stabilise in later years. In the meantime, since she is still vulnerable, we'll be taking precautions such as limiting her exposure to sick people, avoiding crowded situations, asking visitors to wash/sanitise their hands, and 'handling her with care'. We're really going to have to restrain ourselves as we're so looking forward to introducing our darling Sarah-Hope to you all (she's so sweet! See picture attached!) but will have to take it slow.

We want to thank you so much all for your love and support and for celebrating Sarah-Hope's life with us. By the way, you may have noticed it was first name 'Sarah' and second name 'Hope' before she was born... her father didn't want people to 'lose the Hope' so officially registered her as 'Sarah-Hope' so that HOPE remains! Our prayer for you this Christmas is the same as for our daughter: "We pray also that the eyes of your heart would be enlightened in order that you know the HOPE to which he has called you" (Ephesians 1:18a).

In His arms,

Richard, Leigh and Sarah-Hope

P.S. Once again, apologies for not being able to respond to your messages (which we love!)... If you'd like to receive updates, please contact Carol, who can send you little bits of news every few days - Carol is still our main point of contact for now. Darlene can be contacted with regard to providing help / meeting needs.

On our way home for Christmas

Thanks for setting up my nursery Aunty Carol and granny

Reflecting on the birth experience

Reflecting on the birth experience is humbling – what a God ordained day! The lead up to the birth, complete unity in our marriage regarding the decisions about the birth and care plan, the team of doctors which came together around us, the timing of the birth and God helping us with our work and leave in such a way that we could fully give ourselves to the moment and have space to see where things would go, the compassionate response and staff at the hospital, and then the unexpected outcome!

Serene would be a good way to describe how I was that day. I was at peace and interested to see what God would ordain for Sarah-Hope’s life (and ours!). Rich was buoyant and excited to meet his daughter. We could still feel her kicking away so we were pretty sure we would get a chance to meet her alive which is what we had hoped for.  

How did we feel that she was here to stay? At the actual birth, Rich got the first opportunity to hold her after she had been checked out (I was still being stitched up). He describes that moment as one where a heavenly love for Sarah-Hope literally invaded his heart. He was totally captivated. Receiving God’s love for Sarah-Hope was a tangible experience of how perfect love drives out fear – all the worries we had about what we would do if we she survived seemed to disappear. Love was stronger.

There were still ups and downs. A few days later when her platelet count was found to be very low (an infection was suspected – and many babies born with hydrops die from infection), we weren’t sure what to think and remained guarded as her medical condition was being monitored. But we felt full of purpose – we had started our family and it was the most fulfilling experience of our lives. No one expected Sarah-Hope to come out “ready to go” – and while this amazed doctors (especially those who had tracked her condition throughout the pregnancy), for us there was such a sense of God in our midst. He released us from the burdensome decisions about life support – He had given her life. The presence, peace and grace of God that we knew at that time was enthralling. Yes, there was pain and we still had a long road ahead, but God was with us and we felt thrilled to be on this adventure with Him. We had fallen into the hands of God!

Update - 11 days old

Sarah-Hope is a delight... The only tube left is her feeding tube, which is going to be with us for quite a while as her oral feeding ability is constrained by her respiratory function (but lungs do grow!). BUT exciting news is that her doctor says he'd like her to be home by Christmas! Hoping Santa visits Sarah-Hope in a big way cos we didn't plan for this:)  

Update - 7 days old

The nurse on duty yesterday insisted on trying the first half of one of her feeds with a bottle so we got the opportunity to see Sarah-Hope suck and swallow which is crucial to her feeding in the future. The nurses have noted her strength and attitude in her medical file... So we clearly have quite a character on our hands! Leigh is pretty busy 'putting food on the table' (expressing) for Sarah-Hope, Richard is hogging all the cuddle time!

Whatcha looking at?

Still getting used to bath time…

Born with a few extra chins

All this attention is exhausting!

Update - 6 days old

Today Sarah-Hope moved out of her incubator (the disco-box as Richard named it after she got some light therapy for jaundice a few days ago and spent some time under those funky lights with a pair of ultra cool shades) and into a little cot in the neonatal ICU... AND she came off her oxygen (which hasn't been enriched but just giving her lungs some support ito flow). We also dressed her for the first time (yes a sleeveless babygrow, bless her) as she's been in a nappy only for the last 6 days baking away in the disco box AND we learnt how to swaddle her. Its so nice getting rid of tubes one by one.. Means she's able to get even closer to us. We so appreciate all the love and messages we're getting... Grace to you all, from the adoring parents of Sarah-Hope.

From my disco box…

Into my very own cot!

Update - 3 days old

Sarah-Hope's still breathing and feeding fine, her platelet count is low so she had a platelet transfusion and is on antibiotics. Ultrasound showed that spleen, liver and kidneys all look structurally sound, and x-ray showed that pelvis and leg bones all looking good. Leigh has begun expressing breastmilk for feeding the precious bundle, is up and about and recovering well from the op. We’ve really enjoyed feeding, changing nappies, and skin-on-skin cuddle time. Rich is an extraordinary dad. He has the NICU staff all a flutter every time he takes his shirt off to have skin-on-skin time with his daughter.

Skin-on-skin with dad

Letter introducing Sarah-Hope Berg

Dear family and friends

We'd like to introduce you to our precious Sarah-Hope, who was born on Friday afternoon by c-section weighing 2.65kg. The birth was an amazing experience and we're all being really well looked after. She's in a stable condition, especially when she's on mom's chest.

She came out 'pink and feisty', and demonstrating a serious will to live! She has blown everyone away with the hurdles she's overcome, notably:

- her lungs, though while on the small side, are working hard but fine which is remarkable given that they were severely underdeveloped half way through the pregnancy

- her heart is beating away happily

- almost all the hydrops/swelling has been absorbed (she has gorgeous extra skin rolls to show for that around her tummy and neck)

- she already has more hair than her dad, and deep blue eyes.

She does still have some significant physical challenges as her limbs are severely handicapped. Notably, she has no arms although she has sweet little hands. It’s difficult to say at this point what her limb functionality will be, but given Sarah-Hope's determination we're sure she'll overcome this.

The journey from here has many unknowns, so we're just taking things one day at a time while getting to know our special child.

Thanks again for your love and support. Although we may not be able to respond individually, we do so appreciate all your messages. Leigh's sister, Carol Whyte or Darlene Cons can be contacted for updates.

Richard and Leigh

The birth of Sarah-Hope

Waiting for Sarah-Hope

First precious moments as a family

Paediatrician describes her as “pink and feisty” and she scores 8 and 9 for her Apgar tests!

ICU in my very own room for the first few hours after birth

Final plans for the birth of Sarah Hope

Choosing a paediatrician

We knew we had found the right paediatrician to be at the birth when on discussing the framework for Sarah Hope’s birth and care plans, we realised that he would be as active in providing care and comfort for our daughter if she was dying as if she was surviving. This felt quite different to the “hands off approach” approach that we had come across, and it felt like it honoured how we’d want our daughter to be treated.

Home and hospice plans

If Sarah Hope was going to survive for a longer period, we knew that she would not come out of hospital for a little while so we would be able to make plans to get ourselves sorted out at home etc. We deliberately underprepared for this option, but my sister was on standby and had a list and knew where she could borrow items in order to set us up at home if this was necessary.

The more challenging possibility was that if Sarah Hope survived but would still need 24 hour nursing care. We probably wouldn’t want her to live in hospital indefinitely as our whole aim was to emphasise quality of life. I had begun researching palliative care, whose motto is to “add life to time rather than time to life”, and totally identified with this approach. We live next door to Nazereth House, which has a hospice geared up for neonates, so I decided to call them up as I was keen to learn more about palliative care. I wasn’t really even sure what I was asking when I called, but the sister in charge of the hospice said “Leigh, I’ll call you in an hour with an answer”. She called back and asked me to come to a meeting with management. She didn’t want me to be intimidated but this meant meeting with Mother Superior, another nun who is a social worker, the head of the Children’s home and her (the head of hospice). She also didn’t want to get my hopes up as she said the initial response was “we’re not covered for this”, but they had never before received a call from someone who was yet to give birth (most of the children in their hospice were abandoned) so they were interested and open to hearing my story.

The meeting with the management at Nazereth House was remarkable. I shared our story, explaining that we had faced real opposition by choosing to continue the pregnancy, and although Sarah Hope had the complication of hydrops which was expected to be fatal, she also had a chance of being born alive. Mother Superior said to me “when we’ve considered how much opposition you must have faced to get this far in your pregnancy, it’s clear that God must be with you. I have such a sense that God is going to do something amazing through all of this”.

The sister who is a social worker explained to me that children have to be placed at Nazereth House in terms of the Children’s Act. This is a legal process, but should not be interpreted negatively because it is so. Because of a recent case of theirs, whereby the baby required a level of nursing care that the parents would not be able to provide at home, they thought that Sarah Hope could possibly be cared for at Nazereth House on the same basis. They prepared all the paperwork in the eventuality that this would be the case so that if we needed them they would be ready to help. I was taken on a tour of the grounds and the hospice, saw exactly where Sarah Hope would stay if she were placed there, and was amazed at how everyone I met was so warm and had already heard about Sarah Hope. I was so humbled by the meeting. Not only their willingness to help and go totally out of their way to have the option of being able to do so, but also their attitude to the lives of those in their care. They spoke of each child with such delight and love – they were extraordinary women. It was also very special for me, because knowing that I had their support meant that even if Sarah Hope survived but not in a good enough condition to come home, that I had somewhere close by to take her. This made going into the birth a lot easier, and I so appreciated how the Lord made provision for this concern of mine.

Planning with the gynae

My gynae was shocked when I told her I had been counselled that Sarah Hope had an outside chance of survival. I realised that the whole time she must have been going on the conclusion of the reports by the first sonographers who said that the condition was lethal in bold print (without a diagnosis, however). The latest news totally changed matters for her - if there was a chance of survival, then you wouldn’t want to make the situation worse by applying limited monitoring to the birth which could result in cerebral palsy, for example, in addition to what we were already having to deal with.

I told the gynae that we’d decided to elect for a c-section, which she was delighted about! I was so impressed that she never even mentioned a c-section to me before. She had actually encouraged natural birth on the basis that she understood from the first sonographer’s report that our baby was not going to survive. And given that one’s first pregnancy is the index pregnancy setting the bar for future pregnancies, a natural birth would be better for my “obstetric career”. I thought this was a hilarious concept but I understood what she meant. After my appointment, I went down to the labour ward to get a feel for how everything worked and cried all over an unsuspecting mid-wife there as I tried to explain our situation! The ward seemed really accommodating, and I felt comfortable that they would try and give us our own private space however they could.

At 36 weeks, I went to the gynae for a check up. We had a chat initially getting all the arrangements for the birth out of the way. My sister for some reason was keen to come to the appointment with me so she was there as well. We then went to check the baby out. Where things had been stable for months (including a detailed scan 2 weeks before), there was now a significant drop in the amount of fluid. The gynae did a Doppler and the blood flow to the placenta was bordering on abnormal. We needed to get the baby out! It was a Wednesday, so I asked if we could do it on Monday – after the weekend, so we could at least gather ourselves? But the gynae said leaving it that long meant risking her not coming out alive. We made plans for a c-section on Friday afternoon. We had two days to go – Sarah Hope was coming whether we were ready or not!

Memory making

In terms of memory making, we aimed to go into hospital with a plan for what we’d like to do with Sarah Hope if she lived for 3 hours, 1 or 3 days. In those circumstances our time would be limited and we’d want to use it really well. While these plans were flexible (so as to not set us up for additional disappointment if we couldn’t carry some of them out), we wanted to be intentional about the time we had with her, be present and make memories. If we had longer than that, we didn’t need to worry as much, but it was still good to have some things in mind to do. My sister organised some sweet little outfits for her and books that we wanted to read to her. She also bought the basic goodies like a few nappies and cotton wool etc so I never bought anything for Sarah Hope before she was born. And of course, we had the beautiful receiving blanket with Sarah Hope’s name embroided on it, which my mother had made months before.

Letter to the nurses at the hospital

Birth of our daughter, Sarah Hope Berg

Thank you for being a part of this significant time in our family’s life.

The complication of hydrops fetalis was recognised early on in the pregnancy. The cause for this, and other anomalies, has not yet been diagnosed, but we understand that the prognosis for survival is likely to be poor.

We celebrate our daughter’s life, but we are also not afraid of death, recognising that it is God who gives and takes away. As a result we would emphasise quality over quantity of life for Sarah Hope.  We would rather that she has a "good death", than prolong or cause unnecessary suffering. We want to protect her dignity, and offer her as much comfort as possible.

We don’t want her life to be artificially prolonged by aggressive intervention. We do realise, however, that she could survive without resuscitation. While we don’t want to prolong suffering, we also don’t want to worsen disability. We want to prepare for both the medical decisions that need to be made as well as for a precious time of meeting, holding and possibly saying farewell.

We would so appreciate your helping us to enjoy our time with our daughter, in the greatest privacy that is possible in this setting. We would like her to be with us (in a private room) and to have as much skin-on-skin time as possible. We are likely to arrange a photographer to help us capture some memories.

Should Sarah Hope pass away, we’d like to have an opportunity to bath her and dress her, have as much time as we need with her to say farewell (and possibly invite some family and friends to do the same). We’d like to arrange the following keepsakes:

- her blanket, clothes/booties/cap

- lock of hair, if relevant

- hospital bracelet and any other hospital cards / related items

- footprints and handprints

Thank you for your help.

Regards

Richard and Leigh Berg

Last email sent out to family and friends

Dear family and friends

We want to thank you for being so gracious and supportive over the last few months. Sarah Hope has held on beyond all doctor's expectations and will be born this month - we're really looking forward to meeting her. She is due on 24 December, though she may well come earlier!

We do not know what will happen once Sarah Hope is born given the complications experienced in the pregnancy but we do know that she is a precious gift to us. 

While we acknowledge that the road ahead does look extremely challenging we are fully confident in the goodness of God and the strength of family and community. Believing in God's promise of eternal life we need not fear death, but rather choose to celebrate the life of our beautiful daughter, who has already brought us much joy and many special memories.

Once she's born, we'll update you as soon as possible. We so appreciate every one of your messages, though we may not be in a position to respond. Leigh's sister, Carol Whyte, can be contacted should you wish to find out what is happening or if there is any way in that you can help.

Much love and grace to you all,

Rich and Leigh”

The night and morning before

My family came around with some dinner and to wish us well for the birth. My sister arrived with all the goodies we needed for the hospital , and my mother brought a gift she had made – a treasure box for all the memories we wanted to capture of Sarah Hope’s birth with her name beautifully embroided on the top. We were so touched and delighted. We knew that we really wanted to be present at the birth so made plans to communicate with my sister only, who would then be available for others to contact. That would be the arrangement for as long as we needed it to be.

We stayed up most of the night organising ourselves and clearing our calendars for the next while so we wouldn’t have to concern ourselves with anything outside of Sarah Hope. I had hoped that Rich and I would have had some time together the morning of the birth but it didn’t really happen. I hoped that we might summons the energy to pray on the way to the hospital but we actually had no words to pray. We knew that others were praying for us, however, and that God had prepared us for the moment. We had wrestled for months – now was a time to rest in Him and get ready to meet our daughter.

Choices regarding the birth and care plan for Sarah Hope

The day after the 28 week scan, I spoke with the geneticist who said that based on the report we were now looking at an outside chance of survival, for a shorter or longer period of time. She explained that the decisions around what level of care to provide at birth were not entirely black and white as if one decides to opt for supportive care, it needs to be provided in such a way that it does not worsen disability should the child survive (for example, not providing enough oxygen at birth which could result in brain damage). I realised I needed to find out a lot more about intervention versus supportive care, and based on the advice of a doctor friend made plans to chat to a number of paediatricians to learn about how they would handle this type of situation. Right from the 13 week scan, I was quite interested in the ethics of these types of decisions, but now was the right time to look into it.

The questions we were wrestling through were:

1.       What type of birth to go for? When a diagnosis is “incompatible with life”, some choose to follow a natural birth even though this would be more stressful for the baby because their baby is not going to live for long and this would be better for future deliveries. Others choose to go for a c-section so that they can get as much time with their baby alive as possible. We understood the arguments for both sides and totally respect that this is a personal choice of the families involved. In our case, we didn’t have the “security” of a diagnosis that was definitely incompatible with life. While the complication of hydrops was expected to be fatal, it seemed to be improving, and there was no clarity on the underlying cause of the hydrops.

2.       What type of after birth care to go for: supportive or comfort care measures versus more aggressive intervention. We certainly didn’t want to abandon Sarah-Hope by not supporting her adequately. But we were also concerned about the other extreme where you intervene more aggressively, giving your child all the mechanical life support available and “create viability” thereby preventing a child from a good death, as they now have enough function to live.

There were two extremes. The “less intervention route” was to go the natural birth route and not monitor the baby during the birthing process. The “more intervention route” would be opting for a c-section and applying whatever medical technology was available to support the life of the baby.

We found that consulting with various doctors meant processing their attitudes towards life, death and disability. Doctors may be trained in science, but their opinions are influenced significantly by their own worldview. But after working through all of their opinions, it became clear what ours was. It was also interesting to appreciate the privilege of private medical cover and being able to consult various doctors who generously gave us time to talk things through free of charge! I wondered how I would have coped if I was in a health system where these choices were made for me, where due to “resource constraints” interventions may have been withheld because the baby had a poor prognosis. While it may have taken the burden of making the decision away, the results could have been more difficult to deal with. We really had to come to terms with the fact that as parents we were going to make decisions which would have an impact on our child’s life. And we wouldn’t necessarily ever know what that impact was, whether it was the right or wrong decision. Intervening didn’t guarantee that she would live. Withholding support didn’t guarantee that she would die.

At 29 weeks, we decided that should the baby come before 34 weeks, we would go the unmonitored natural birth route with supportive measures after birth, given that the prematurity would add further complications. So we had a few more weeks to get our plan together should the pregnancy continue past 34 weeks.

Based on the scan reports, a couple of the paediatricians said that if we didn’t intervene she would probably die in the delivery room. The combination of hydrops and hyperplastic lungs, plus the cystic hygromas meant that it was likely she would find it difficult to breathe. Some said that if we were considering intervention we may need to consider more drastic measures such as using nitrous oxide etc. Others said they “wouldn’t make drastic interventions for a handicapped child”. This made me so angry. Would I choose a birth and care plan based on the fact that my child did not have arms? Was it fair to discriminate on that basis? This proved to be the crux of the matter for us – would we make the same decisions for this baby as we would for one that appeared to be healthy?

As I talked through these issues, a couple of friends reminded me that this was not an intellectual test that we needed to pass but a matter of faith and trust in God. This was really important for me – obviously the life and death implications of the decisions were weighty, but it was important to not fear getting it wrong, and believe that God is ultimately in control. I needed to exercise trust in Him in this regardless of where we got to in our response / decision making, whether we made the right call or not, and believe in His goodness regardless of the outcome.

After a discussion with a couple who ran the parenting course at our church, we decided that we should provide the same level of support as we would for a healthy child – we would consider a c-section for a healthy child, so it was therefore on the table for this baby too. We would want a healthy baby to have the standard supportive measures after birth such as suction, a bit of oxygen etc, therefore these should be provided for Sarah Hope. When discussing this with our church elders, we decided that we would do our part to “bring her into the world” by c-section so she would have the least stressful arrival possible, and then see where God took it from there. What happened after birth could only really be determined at the time.

We were counselled to put down on paper a framework for making decision at Sarah-Hope’s birth. Too often people make very specific birth and care plans (even for typical births) which can’t be adhered to at the time  – so we thought this was a great idea as it would give flexibility to respond to the situation which emerged without creating additional disappointment, yet communicate what we really valued and hoped for.

We jotted down the following points and discussed these with our church elders before taking it to our doctors:

1.       Sarah Hope been given to us as a gift, we want to steward her life and be the best parents to her, regardless of her condition, prognosis and length of life.

2.       We are both for life and not afraid of death, recognising that it is God who gives and takes away and believing in eternal life.

3.       In recognition of the ‘medical facts determined by the scans of sonographers’ regarding the complication of hydrops, without known cause, as well as other anomalies, we understand that the prognosis for survival is poor and the potential for further complications high. As a result we would emphasise quality over quantity of life.  We would rather have a "good death" than prolong or cause unnecessary suffering.

4.       As her parents, we want to protect her in terms of her dignity and prevent her:

·         From being disregarded and abandoned because of her prognosis, appearance or disabilities

·         From being treated as an object of medical technology/heroics

5.       We want Sarah Hope to know God's love for her through us, that she is precious and valuable, to know as much comfort and care and experience as little suffering as possible

6.       We want to prepare for both the medical decisions that need to be made as well as for a precious time of meeting, holding and possibly saying farewell.

7.        We don’t want her life to be artificially prolonged by aggressive intervention. We do realise, however, that she could survive without resuscitation. While we don’t want to prolong suffering, we also don’t want to worsen disability.

8.       Running through different scenarios, we’d appreciate understanding the decisions that might need to be made as well as clarification on a number of terms (resuscitation, “letting nature take its course” in a hospital context, supportive measures, comfort care, palliative care etc).

Having the courage to face up to some very difficult questions and emotions

For the next two months we were very busy with work, working evenings and weekends and didn’t have much time to process. Underneath it all, I was emotionally distressed. I was searching for answers because the whole pregnancy we thought that the next scan would give us more information… and yet although the picture was changing, the doctors could not really tell me anything. Based on their opinions we shouldn’t have been at this stage in the pregnancy. I didn’t hold it against them as it was an unusual situation, but I realised I couldn’t look to them. We really had to throw ourselves on the mercy of God, who knows everything… even if all the specialists we were consulting didn’t.

When we first met our pastoral counsellor, we admitted to her that our “worst case scenario” was the baby making it to term, as having a significantly disabled child was extremely daunting. Looking at it from that place, we didn’t know how we would cope and we certainly didn’t know what that would then mean for future family – would we have the emotional or financial resources to provide for Sarah Hope let alone have any more children? Having passed the 28 week scan, with our baby’s heart beating away into the viable pregnancy stage, we were indeed suddenly having to face up to this possibility. In a very honest session with the pastoral counsellor, we discussed the questions I was grappling with:

-          How did I really feel about my daughter living or dying and why?

-          What would be the impact on my life if she lived or died?

-          How did this influence me in making decisions about how much medical intervention we wanted during and after the birth?

At the 13 week scan, we faced so many potential outcomes. Of these, miscarriage, maternal health complications, stillbirth hadn’t arisen as they had been expected to … and the possibility of live birth, infant mortality or a surviving but disabled child were ahead of us. We had consciously worked at not fearing outcomes… and this also meant not hoping for a particular outcome. Fortunately, they all seemed like pretty awful outcomes so it was hard to hope for any of them! It was possible to consider which outcome would be harder and want to avoid it – but it was impossible to know that. What does one hope or pray for in such a situation? The scripture Romans 5:2b - 5 was really key for us - to put our hope in the glory of God. We wanted an outcome that would bring God glory and we were determined to walk this out as best we could for that purpose. But even though we were guarded about hoping for particular outcomes, as the weeks went by, we did have actual desires which we prayed for. The first prayer request was that we really didn’t want to have another miscarriage. As our daughter pulled through unexpectedly into the viable pregnancy stage, we then realised we could be looking at birth with her dead or alive. We wanted our daughter to be free, which we knew would only be in heaven, but we also wanted to meet her and have the opportunity to love her in person. We were enjoying her growing inside of me so much, we didn’t want to lose her and the richness she had brought to our life. We wanted more time. We wanted her to be born alive so that we could have some time with her. We wanted to hold her.  We also prayed boldly for healing at times.

The increasing boldness and passion that we had for Sarah-Hope’s life didn’t make her birth, which was drawing near, less daunting. She seemed safe inside me. As soon as she came out, we knew that she would be subjected to prejudice because of her swollen and disabled body and this broke our hearts. Even though we knew that Christ himself was despised, not esteemed, had no beauty  or majesty to attract us to him (Is 53), concern about her appearance was real. More than anything, however, I was concerned about what my emotional reaction would be to Sarah-Hope’s birth and survival. Though no doctors would really talk to me about her living, I knew I had to prepare myself for this outside possibility. I would often say to Richard, “do you realised we could have a disabled child?” One night he amazed me by saying, “Leigh, it would be incredibly difficult. But I would rather have that and fall into the hands of God than abandon her.” I was stunned and humbled by this beautiful response. Richard’s trust in the grace we would find by “falling into the hands of God” deeply moved and encouraged me. Obviously, as Sarah-Hope’s mother, her living would impact my day-to-day life in a different way to Richard. But Rich helped me to lift my eyes to the Lord to be able to say “if He is with us, what can man do to us?” This, in fact, had already been our experience in the pregnancy. Though outsiders would look at our circumstances and consider them to be a “nightmare”, we had known real peace, a wonderful sense of God’s presence with us as He protected us on the journey. God had been with us; God would be with us. This gave us confidence.

The key to making the birth and care plan decisions was surrendering to the truth that our sovereign God in the heavens would do whatever pleased him (Psalm 115:3), and we had to accept what that was. That freed us up to give our daughter the opportunity to come into the world under the best circumstances, and then see whether God would give her life or take her to be with Him. And so we set out to make our plans in such a way that promoted her life chances but did not presume them – we did not know what the outcome would be, but we wanted the decision to be the Lord’s.

I found our sessions with the pastoral counsellor very helpful. As we were sorting through different opinions about our situation, she encouraged us that people would give advice from their perspective and it must be understood as that. God was calling Rich and I to walk this out and as Sarah Hope’s parents we had the most information about the situation which would be used to make our decisions. Again, we were reminded that parenting, like the rest of life I guess, includes making mistakes which may be far-reaching but thankfully we serve a God who saves us and won’t abandon us. We treasured the prayers that covered us during this period and all those who sent messages encouraging us with scripture and love.

The viable pregnancy that no one expected

At 26 weeks, the gynae was in totally different mode to our meeting 4 weeks before. Having crossed the 26-week mark, the pregnancy was now considered viable and issues such as birth plans and care plans were totally on the table for discussion. I had hardly sat down when she started firing away with questions about monitoring the baby during birth and whether we’d go for intervention or supportive care after birth. She suggested no monitoring and supportive care, and that natural labour could continue, possibly with draining fluid if necessary to get the baby out. I told the gynae that we had arranged to have another thorough scan with the sonographer at 28 weeks. And that depending on how things were looking, we would start to put our plans together. She performed an ultrasound scan – there seemed to be less fluid in the heart and lungs and the heart was beating strong, so we were all interested to see what the detailed 28 week scan would reveal.

The 28 week scan indicated that the heartbeat was strong and organs were in a pretty good shape. There was no improvement in limbs or worsening of swelling, and the placenta and amniotic fluid looked normal and stable. The sonographer explained that this meant that there was a greater chance of getting to full term. Because the risks we faced with fluid build-up could be either heart failure for the baby or maternal health complications, we were glad the swelling wasn’t getting worse. On a superficial level, we were quite relieved that it didn’t look like anything would happen soon as we both had so much work in the following two months! But on a more serious note, it was very challenging emotionally with the pregnancy reaching viability and what that could mean for us. That weekend we asked some friends to come over to pray for us and the baby. We shared honestly about where we were at, and so appreciated them taking the time out to lead us into a time in the presence of God.

Pregnancy Shoot

In organising the shoot, we explained our story to the photographers and they offered to do the shoot as a gift for us. We were so blown away by the generosity and kindness of these ‘strangers’, and even more so by the stunning shots they took. We were so proud – and told everyone about them! Check out lovemadevisible.co.za for more of their outstanding work.

Rich running the Table Mountain Challenge for his daughter

Rich at the half way mark

Those legs made it all the way around Table Mountain

Celebration at the end!

As Rich ran around Table Mountain that day, many runners asked him who Sarah Hope was. He explained to them that it was his daughter. During one of these conversations Rich felt led to share a bit more of the story. The runner was also a Christian and wanted to pray for Rich. We met him and his wife at the end of the race and that week they came to our home and prayed with and for us and Sarah Hope. We were so touched by their care and concern for a family they did not know. And they continued to be in touch with us after the birth as well.

After the race, we hosted a birthday dinner for Rich. It was such fun. Friends of ours who were at the dinner wrote a letter to Sarah Hope:

"Dear Sarah Hope

Last night was your dad's healthy (vegan) birthday party. Your mommy was absolutely glowing and she was so radiant. Her tummy had grown and she could now feel you move. Your dad had just completed the Table Mountain Challenge (a very long run up and down the mountain) just for you. His arms were covered in your name.
You were his motivator and you gave him the courage he needed. What speaks to me so clearly as I woke up the next morning is this: you, Sarah Hope, have been celebrated, loved and treasured for each day. Your fighting spirit, your determination and strength are remarkable.
Your parents have been on a serious journey with you, but through it all their unwavering faith, grace and supernatural joy has been a testimony to two incredible individuals and to their genuine love for Christ.
Sarah Hope, thank you for everything you are teaching us. We really do love you and your family immensely.

Much love
Aunty Katie and Uncle Pete"

Sharing the Sarah Hope story

We continued to tell more and more people about the pregnancy.

“We've named our daughter, Sarah Hope, and are really trying to enjoy the time that we have with her. We’re always in a bit of a state before a scan, wondering if the little heart is still going... but we're enjoying being parents, albeit to an unborn life, and have started trying to build memories and prepare for her birth in a way which will be hold no regrets and be helpful for any grief process we may need to go through. Her life, even if it is really short, has had a wonderful impact on us and we have much to be grateful for. We certainly believe that the situation could be reversed and that she could be healed through an extraordinary miracle (and it would need to be an extraordinary one!). At the same time we're not putting our hope in a particular outcome but rather putting our hope in God and that his grace will be sufficient, no matter what the path is that He chooses for us. We've had to work through the fear of Sarah Hope making it to full term, but being severely disabled and what that would mean for us. We’re learning what it is to fear God and not fear particular outcomes (miscarriage, maternal health complications, stilbirth, disability etc). We've been getting great support on a range of levels, which we're really grateful for.”

Sharing our experience was powerful in that people responded fully, telling us how they were, being very open to the challenges they themselves were currently facing. It was a beautiful time of sharing honestly and we treasured how we were able to connect with old friends, even if just over email, during this time.

We had another significant community moment when we shared our story with our church small group. I spoke about the medical details and how the pregnancy had progressed as well as what had been challenging in the journey. Rich spoke about our theological response to the situation. Our community wept with us regarding the challenges that lay ahead, but felt so privileged that we were sharing it with them and allowing it to be a community process. They commended us for the way in which we were walking things out and prayed beautifully as well. It was such a God-centered evening, it was not really even about us or the baby, but a stunning offering to God from all.

We also had a very special time of prayer with the elders of our church. They really took the time to listen to us, and prayed for us. We felt so covered by their love and humbled by how they had served us.

22 week scan – preparing for the end; creating memories

At 22 weeks, I went to my gynae for a check up. As for all these appointments, I went in armed with my latest list of questions. At this point, I was thinking about the fact that I needed to be ready to go into labour and given that this could happen anytime. I wanted to find out about labour, how the hospital works, whether you were given a chance to hold the baby once you’d given birth to it etc. From what I had read about mothers who had had late miscarriages and stillbirths, the opportunity to hold your baby and have time to say farewell seemed really important to the grief process.

My gynae looked at me as if I was mad! She said to me that the biggest concern she has is that I would not go into labour. That the baby would die and somehow we are going to need to get it out. It was a hard consultation with her and a rather abrupt reality check. She told me the baby is not going to look very nice and would I really want to see it? My sister came to the appointment with me, and asked the gynae how long you would stay in hospital for after delivery. She said you would need to be there for 6 hours after giving birth for observation, then you could go. That was that. She had a quick look at the baby and admitted she didn’t see it getting to viability.

That night I didn’t have time to chat to Rich about it as I walked with a friend after work and then I went out to lifegroup (church small group). I cried myself to sleep. I didn’t want to wake Rich up to talk things through with him as I knew he really needed his sleep and was dealing with a lot of pressure at work. But then I felt Sarah Hope move… it was so beautiful. She kept me company through the night, moving about inside me. I felt so loved by God for having her and greatly appreciated her presence.

Sometimes I wondered how many people I interacted with, be they medical professionals or friends and family, believed that deep down this was unwanted pregnancy that I did not have the courage to terminate. That was NOT the case! This was a life we had been blessed with, we WANTED her. We wanted to experience her life, we wanted her life to be afforded the opportunity to touch ours, we wanted to meet her, hold her, comfort her and enjoy her. Sarah-Hope was NOT a religious principle, a law we had to obey, a duty we needed to carry out regardless of how we felt about it… she was our daughter, who had been knit together in my womb, whom we loved.

I met up with the pastoral counsellor and told her all about the latest scans and what the sonographers and gynae had said. I explained what I was hoping for in terms of having the opportunity to meet my child, and create memories with her even if she wasn’t alive at the birth.  The pastoral counsellor had worked as a midwife years ago and graciously and helpfully explained to me the reality of giving birth to a baby who is no longer alive. She said that there is a chance (and she had some terrible images in her head that she didn’t want me to have) that there will not necessarily be a whole body that comes out at birth because of the disintegration that takes place after death and during delivery. She suggested that we prepare for birth and the grieving process in such a way that was not dependent on being able to hold or see the baby as these images may not be what we want to remember our child for. There would be grief related to seeing the baby and grief related to not seeing the child, and we needed to ask God for guidance as there were no clear cut answers. We were encouraged to journal, taking pictures of us during the pregnancy and collect those of her in the womb and in so doing make memories which did not rely on that moment after birth in case the circumstances were such that it would be best to not see the baby. She was very encouraging, however, about the fact that we are battling for the dignity of our child to the glory of God.

So I set about the task of creating memories in the pregnancy stage in case we were not able to do this after the birth. Often before a scan, never being sure whether Sarah-Hope’s heart would still be beating, we would do something special with her. Rich was hilarious in this. For instance, we’d walk up the mountain and he would put his hands on my tummy and talk to his daughter about the stunning city we live in, turning me around as if she could see the sights through my belly button!

We specifically asked for pictures and dvd’s of our future scans (we realised this had not even been offered to us because of the abnormalities!), we amused the sonographer as we asked to hear Sarah-Hope’s heart beat again and again so Rich could record it for his phone’s ring tone, Rich ran the Table Mountain Challenge for Sarah-Hope with her name written on his arms and legs, and we organised a pregnancy photo shoot. I also asked my mother if she would make a blanket especially for Sarah Hope’s birth – something that I could wrap her in once she was born. This is the blanket she made:

We were so enjoying her life inside me and being deliberate about celebrating and capturing it. At the same time, we were able to appreciate that we would need to make flexible plans regarding the birth and what we might do after this in terms of memory making. We did not need to have additional disappointments around her birth if things didn’t work out the way we imagined.